Friday, December 23, 2022

Fw: Ref.:  (LML) The Leprosy Mailing List

 

Leprosy Mailing List – December 23,  2022 

Ref.:  (LML) The Leprosy Mailing List   

From:  Pieter AM Schreuder, Maastricht, the Netherlands 


Dear colleagues,


The past years we have seen quite a lot of new subscriptions, bringing the total to almost 600. Not everyone is acquainted with the objectives and functioning of LML. Basically, it is an e-mail based (open) forum for exchange of information, mutual support, training and discussions on leprosy among persons based in different countries and continents. It was started in February 2001 by Salvatore Noto at the Centre for Training and Research in Public Health (Cefpas) in Caltanissetta, Italy, and up till now supported by AIFO by hosting our blog (LML blog link: http://leprosymailinglist.blogspot.it/).


LML is independent and has no financial ties to any governmental or non-governmental organization or the World Health Organization (WHO). All information passes its editorialboard (S Deepak, B Naafs, S Noto and P Schreuder) before being distributed. However, opinions expressed are those of the contributors and not necessarily shared by the editorial board. LML contributions are not considered publications as a publication in a recognised scientific journal. They can (and are) however be cited because represent professional opinions.


In an editorial of the Leprosy Review of 2012 (The leprosy mailing list. EDITORIAL. Lepr Rev (2012) 83, 331–334) the history, objectives and functioning of the LML are presented.  

The specific objectives of the LML are: 

- 1) divulge information about leprosy, its causes, prevention and treatment;  

- 2) share information about management of leprosy control activities and programmes;  

- 3) share information about socio-cultural aspects of leprosy and 

rehabilitation of patients with disabilities;  

-4) offer a distance learning tool in leprosy for health professionals; and  

- 5) create a forum to discuss the main issues on leprosy and its control activities and programmes. 

 

Contributions like papers, clinical cases, letters, comments, reports etc. are sent to the moderator (presently Dr. Pieter Schreuder) via e-mail, who edits them in a common format and are then circulated among the members. Often prior to circulation of the documents, there is an exchange of mails between the moderator and the contributor, to clarify or modify points that are not clear.  

 

LML is not only a forum for those still active in the field of leprosy, but it also offers the opportunity to those not active in the field of leprosy anymore, but who have a wide and valuable experience to share, to continue to contribute to the education of new comers in this field." 

 

To summarize, LML is an open forum to which all those interested in leprosy are welcome to contribute. All opinions are respected, but have to be well argued (preferably backed up by literature references) and relevant to the topic in discussion.  

 

 

Finally, LML wants to pass the editors Season's Greetings and wish you all the best for 2023. Do not hesitate, any contribution, may it be a problem you encountered in your field, or information you want to share, is welcome. 

 

 

Best wishes, 

 

Sunil Deepak 

Ben Naafs

Salvatore Noto

Pieter Schreuder 

 

LML - S Deepak, B Naafs, S Noto and P Schreuder 

LML blog link: http://leprosymailinglist.blogspot.it/ 

Contact: Dr Pieter Schreuder << editorlml@gmail.com  

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Wednesday, December 14, 2022

Fw: Ref.:  (LML) Preprints with open peer review

 

Leprosy Mailing List – December 14,  2022

 

Ref.:  (LML) Preprints with open peer review

 

From:  Joel Almeida, Mumbai, India

 

Dear Pieter and colleagues,

Major funding organizations including Gates Foundation, Howard Hughes Medical Institute, Wellcome have emphasized their support for rapid online preprints with open peer review. Reviewers are not anonymous, nor are their comments private.

https://elifesciences.org/for-the-press/e5423e39/funders-support-use-of-reviewed-preprints-in-research-assessment

This approach makes scientific publishing more like a conversation between knowledgeable people. It helps boosts science because it reduces delays while reviewers are automatically encouraged to maintain reasonable standards of analysis and accuracy, while avoiding questionable conduct. Such improved approaches help separate fact from fiction. Facts are useful for improved outcomes among patients, persons affected, and populations affected.

The approach is not only being practised, but also it is gaining ground with the backing of major funders.

 

In HD (leprosy) there has been widespread epidemiological stagnation but with a few exemplary districts achieving rapid decline in transmission. Facts matter if we are to break out of stagnation and match the achievements of the exemplary districts. LML has a wide and knowledgeable readership. It has played, and can continue to play, an important role in separating facts from fiction.


Best,

Joel Almeida


LML - S Deepak, B Naafs, S Noto and P Schreuder

LML blog link: http://leprosymailinglist.blogspot.it/

Contact: Dr Pieter Schreuder << editorlml@gmail.com

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Thursday, December 8, 2022

Fw: Ref.:  (LML) WHO Goodwill Ambassador's Leprosy Bulletin NO. 112, December 2022

 

 

 
Leprosy Mailing List – December 8,  2022

 

Ref.:  (LML) WHO Goodwill Ambassador's Leprosy Bulletin NO. 112, December 2022

From:  Takahiro Nanri, Tokyo, Japan

 

 

Dear Dr. Schreuder and Friends,  

 

Warm greetings from Sasakawa Health Foundation/Sasakawa Leprosy (Hansen's Disease) Initiative in Tokyo.

We have issued WHO Goodwill Ambassador's Leprosy Bulletin NO. 112 December 2022 "Finding mutual inspiration in Hyderabad". In this issue, we feature: 

 

MESSAGE FROM THE AMBASSADOR
In early November, I visited India for the first time in three years. My packed one-week schedule included a meeting with Dr. Poonam Khetrapal Singh, WHO Regional Director for South-East Asia, in Delhi...   Read More 

 

REPORT from HYDERABAD

Summary of 2nd Global Forum of People's Organizations on Hansen's Disease
The 2nd Global Forum of People's Organizations on Hansen's Disease was held in Hyderabad, India, Nov. 6-8, 2022. As with the inaugural Global Forum held three years earlier in Manila, Philippines,...  Read more 

 

REPORT from HYDERABAD
Collaboration with beauty pageant winners to raise awareness of leprosy (Hansen's disease)

Starting in 1972 with the implementation of a "Beauty with a Purpose" contest by the Miss World organization, beauty pageants worldwide have raised expectations that winners will be informed...  Read more 

 

REPORT from HYDERABAD
Summary of 21st International Leprosy Congress held in Hyderabad, India

The 21st International Leprosy Congress (ILC), which was organized around the theme "Early Diagnosis – Better Knowledge – Improved Care," was held in Hyderabad, India, Nov. 9-11, 2022.  Read more 

 

REPORT from HYDERABAD
Case detection innovations for achieving interruption of transmission

Sasakawa Health Foundation (SHF) annually supports the national leprosy programs of nearly 40 countries through the World Health Organization's Global Leprosy Programme (WHO GLP).   Read more 

 

REPORT from HYDERABAD
Testing for rifampicin-resistant M. leprae  

As a tool to achieve the goal of zero leprosy, post-exposure prophylaxis in the form of a single dose of rifampicin (SDR-PEP) given to contacts of leprosy patients has a major role to play.  Read more 

 

REPORT from HYDERABAD
History preservation as a third pillar in the fight against leprosy

In a plenary session sponsored by Sasakawa Health Foundation (SHF) on the second day of the 21st International Leprosy Congress (ILC), SHF's executive director, Takahiro Nanri, called for making history preservation...  Read more 

 

REPORT from HYDERABAD

Preserving Europe's historical heritage of leprosy
Along with Eduardo de Miguel Selma of Fontilles, a leprosy sanatorium established in Spain in 1909 that remains active as a treatment facility and referral center, Sasakawa Health Foundation (SHF) hosted a thematic session...  Read more 

 

REPORT from HYDERABAD

Results of "Don't Forget Leprosy" grant-supported surveys in Brazil
As part of its "Don't Forget Leprosy" campaign" launched in August 2021 amid the coronavirus pandemic, the Sasakawa Leprosy (Hansen's Disease) Initiative has provided grants for surveys on the impact of the pandemic on persons affected by leprosy,... Read more 

 

DATA BOX

WHO's annual global leprosy update (2021 data)
In September 2022, WHO published its annual global leprosy (Hansen's disease) update. The update presents statistics based on 2021 data reported by 143 countries, including all 23 global priority countries.   Read more 

 

AMBASSADOR'S JOURNAL

WHO Goodwill Ambassador's active week in India
WHO Goodwill Ambassador for Leprosy Elimination Yohei Sasakawa started his first visit to India in about three years in New Delhi at the WHO Regional Office for South-East Asia, which also houses WHO's Global Leprosy Programme,...  Read more

 

BACK ISSUES 
We hope that you would enjoy reading the latest Leprosy Bulletin. 

 

 

Takahiro NANRI, Ph.D.
Executive Director, Sasakawa Health Foundation

*********************************************************
Sasakawa Leprosy (Hansen's Disease) Initiative
Sasakawa Health Foundation
Tel
81-3-6229-5377, Fax81-33-6229-5388
email: hansen@shf.or.jp
website: https://sasakawaleprosyinitiative.org/,  https://www.shf.or.jp
*********************************************************


LML - S Deepak, B Naafs, S Noto and P Schreuder

LML blog link: http://leprosymailinglist.blogspot.it/

Contact: Dr Pieter Schreuder << editorlml@gmail.com

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Fw: Ref.:  (LML) Infolep monthly overview of new publications on leprosy, December 2022

 

Leprosy Mailing List – December 8,  2022

 

Ref.:  (LML) Infolep monthly overview of new publications on leprosy, December 2022

From:  Roos Geutjes, Marente Mol, Amsterdam, the Netherlands


Dear colleagues, 

Last month, the 21st International Leprosy Congress took place in Hyderabad, India. The congress was a great success, with many interesting presentations, fruitful discussions and valuable connections, thereby strengthening international collaboration in working towards a world without leprosy. A big thanks to the organizing committee and all participants for their contribution!

Leprosy Research Initiative has announced two calls for proposals: a regular grant and a new research capacity strengthening grant. Researchers can now apply - make sure to submit your Letter of Intent timely!

More information on this, along with other news and events, can be found at the bottom of this newsletter.

The ILEP Technical Commission, Global Partnership for Zero Leprosy and Infolep collaborated to produce a fact-sheet on leprosy reactions. This document provides essential information on how to classify and manage reactions before, during, and after leprosy treatment.

Sunil Kumar Sahoo published a poetry book called 'The Felony', which illustrates the social injustice experienced by persons affected by leprosy. Thanks for sharing your work with us!

The links to the above mentioned publications can be found below. Enjoy reading these and other latest publications! Also, we would be happy to assist you with literature searches on Infolep.


Warm regards,

Roos Geutjes & Marente Mol

www.leprosy-information.org
info@infolep.org
 

 



 



Highlighted

 



Factsheet on Leprosy Reactions: Classify and manage reactions before, during, and after leprosy treatment
Global Partnership for Zero Leprosy, Infolep, ILEP Technical Commission. 2022. 
 

THE FELONY (A story of social injustice since thousand years) (Poetry collection)
Sahoo SK. 2021.
 

Definition of symptoms guide for suspect case identification
Government of Telangana, National Leprosy Eradication Programme, NLEP LCDC, et al. 2022.
 

Inclusive Participation Toolbox
Christian Blind Mission (CBM). 2022.
 

 



 



Leprosy & COVID-19

 



Impact of COVID-19 on leprosy reactions and of leprosy treatments on COVID-19 severity
Ianhez M, Cerqueira SR, Gomes CM, et al. Indian Journal of Dermatology, Venereology and Leprology. Scientific Scholar. 2022.
 

Subdiagnóstico de Hanseníase no Brasil durante a Pandemia da Covid-19
Lopes JGCBS, da Silva IM, Leal MGC, et al. Revista Eletrônica Acervo Médico. Revista Eletronica Acervo Saude. 2022.
 

 



 



New publications

Feel free to contact us to receive full-text versions if these cannot be found through the Infolep portal.

 



In vivo partial reprogramming by bacteria promotes adult liver organ growth without fibrosis and tumorigenesis  
Hess S, Kendall TJ, Pena M, et al. Cell Reports Medicine. Elsevier BV. 2022; 3 (11) : 100820.
 

Summary report on the twentieth meeting of the Regional Programme Review Group and national neglected tropical diseases programme managers, virtual meeting, 23–25 May 2022  
WHO Regional Office for the Eastern Mediterranean. World Health Organization. 2022.
 

Economic evaluation of a leprosy innovation project in Northern Nigeria: cost-effectiveness analysis
Ezenduka CC, Namadi A, Tahir D, et al. Cost Effectiveness and Resource Allocation. Springer Science and Business Media LLC. 2022.
 

Access to Public Healthcare Rehabilitation Services by Persons with Disabilities in South Africa: a Scoping Review
Van Biljon HM, Salie B, Van Wyk JC, et al. Disability, CBR & Inclusive Development. Stichting Liliane Fonds. 2022; 33 (3) : 41.
 

Pushing Down the Walls: Advocating for "Rehabilitation for All" in South Africa
Cobbing S, Gaede B, Chetty V, et al. Disability, CBR & Inclusive Development. Stichting Liliane Fonds. 2022; 33 (3) : 68.
 

Epidemiological scenario of leprosy in marginalized communities of India: Focus on scheduled tribes  
Singh P, Sharma M. Indian Journal of Medical Research. Medknow. 2022.
 

Risk areas for the occurrence of leprosy in border countries of South America - Brazil and Argentina  
Silva-Sobrinho RA, Oliveira KS, Deschutter EJ, et al. PLOS ONE. Public Library of Science (PLoS). 2022; 17 (11) : e0276977.
 

Recording of leprosy cases in India: Need for a user-friendly and effective app
Rao P, Bahunuthula R, Varala S, et al. Indian Dermatology Online Journal. Medknow. 2022; 13 (6) : 697.
 

Opportunity of Leprosy Information Systems as An Effort to Eliminate Leprosy in Papua: Systematic Review
Bahari , Sutantri , Huriah T. Jurnal Aisyah: Jurnal Ilmu Kesehatan. 2022; 7 (S2) : 31-38.
 

Seroepidemiologic survey of the household contacts of leprosy patients.  
Barbosa A, da Silva S, Toledo A, et al. Revista da Associacao Medica Brasileira (1992). 2022; 68 (10) : 1389-1393.
 

Leprosy chemoprophylaxis of household contacts: A survey of Canadian infectious disease and tropical medicine specialists. 
Boodman C, Keystone J, Bogoch I. Journal of the Association of Medical Microbiology and Infectious Disease Canada. 2022; 7 (1) : 8-13.
 

The impact of climate change related extreme weather events on people with pre-existing disabilities and chronic conditions: a scoping review  
Lindsay S, Hsu S, Ragunathan S, et al. Disability and Rehabilitation. Informa UK Limited. 2022.
 

Global investments to optimise the health and wellbeing of children with disabilities: a call to action
Olusanya BO, Davis AC, Hadders-Algra M, et al. The Lancet. Elsevier BV. 2022.
 

 


Self-Care Program for Patients with Leprosy Grade 2 in Abu Zaabal Leprosy Colony  
Melika FF, Hassan MM, Abd-Elkader W. Egyptian Journal of Nursing and Health Sciences. 2022; 3 (2) : 22-45.
 

The Influence Of Perceived Benefits And Commitment On Selfcare Agency Of People With Leprosy In Preventing The Transmission Of Leprosy In Sumenep, Madura, Indonesia  
Hannan M, Notobroto HB, Hidayat S. Journal of Pharmaceutical Negative Results. 2022.
 

Novel approaches in the treatment of Hansen's disease (Leprosy): a case series of multidrug therapy of monthly rifampin, moxifloxacin, and minocycline (RMM) in the United States  
Franco-Paredes C, Garcia-Creighton E, Henao-Martínez A, et al. Therapeutic Advances in Infectious Disease. SAGE Publications. 2022.
 

Lucio phenomenon with concomitant necrotizing fasciitis and acute kidney injury.  
Norman T, Zikry J, Worswick S, et al. Dermatology online journal. 2022.
 

A prospective case control study of resistance to rifampicin, dapsone and ofloxacin in Type 1 and Type 2 leprosy reactions and the therapeutic impact of modified treatment regimen on reactions.  
Muddebihal A, Sardana K, Khurana A, et al. Journal of the European Academy of Dermatology and Venereology : JEADV. 2022.
 

The protective role of tissue-resident interleukin 17A-producing gamma delta T cells in Mycobacterium leprae infection.
Liu Y, Shi C, Ma S, et al. Frontiers in immunology. 2022.
 

Genetic polymorphisms of toll-like receptors in leprosy patients from southern Brazil.
Masin P, Visentin H, Elpidio L, et al. Frontiers in genetics. 2022.
 

Pathogenicity and virulence of Mycobacterium leprae
Sugawara-Mikami M, Tanigawa K, Kawashima A, et al. Virulence. 2022; 13 (1) : 1985-2011.
 

Editorial: Leprosy reactions: New knowledge on pathophysiology, diagnosis, treatment and prevention
Pinheiro RO, Rosa PS, Spencer JS, et al. Frontiers in Medicine. Frontiers Media SA. 2022.
 

A-waves associated are with neuropathic pain in leprosy.  
Garbino J, Kirchner D, França M. Muscle & nerve. 2022.
 

Magnitude dos episódios reacionais na hanseníase em serviço ambulatorial especializado  
Chaves AFCP, de Araújo OD, Sousa EC, et al. Hansen Int. 2022.
 

Lepromatous leprosy with central serous chorioretinopathy
Goel S, Gogia K, Singla R, et al. Indian Journal of Dermatology, Venereology and Leprology. Scientific Scholar. 2022.
 

Leprosy rash precipitated by immunotherapy for suspected inflammatory neuropathy.
Leung A, Arnold B, Hodgson T, et al. Practical neurology. 2022.
 

Should we persist with the term Lazarine leprosy? A historical perspective
Asokan N, Valsalan V. Indian Journal of Dermatology, Venereology and Leprology. Scientific Scholar. 2022.
 

 



 



 



News & Events

 



Calls for proposals - Leprosy Research Initiative

This year, LRI has announced two calls for proposals! This includes the regular annual call for proposals, for funding commencing in 2024. LRI funds research with a focus on leprosy – including research applications combining leprosy with other neglected tropical diseases (NTDs) or other diseases that share cross-cutting issues with leprosy. Alongside the regular call, LRI has now introduced a new Research capacity strengthening grant, for funding commencing in 2023. Letters of Intent can now be submitted via the LRI application portal. The deadline for submission for both calls is January 27th, 2023. Interested? More information can be found on their website!
 

Webinar: Global Health Equity Dialogue Series
13 December, 2022

How Can Health Equity Accelerate Progress toward Universal Health Coverage? Join RTI International for the first virtual session in a Global Health Equity Dialogue Series that will serve as a platform for exchange on how the international community can address the major drivers of health inequities to achieve health for all.
 

Webinar: Three Years of Global Health Compassion Rounds in Synthesis 
20 December, 2022

The Global Health Compassion Rounds has brought together public health professionals from around the world to explore the overlap between their work, their lives, and compassion. This GHCR will explore  what has been shared, highlighting cross-cutting themes, and creating directions for the future.
 

The 5th Asia-Pacific Community-Based Inclusive Development Congress
15-17 March, 2023

The 5th AP-CBID Congress will take place in Phnom Penh, Cambodia. The content of the congress focuses on strengthening social and economic empowerment of persons with disabilities during and after the COVID-19 pandemic through community-based inclusive development.
 

 


Call for Grant Proposals - Sasakawa Leprosy Initiative 

Through its grant program, Sasakawa supports projects that contribute to building a society in which persons affected by leprosy have access to the treatment and services they need and can live their lives free from stigma and discrimination.
 

Lancet Series Launch: Racism, discrimination and health. 
9 December, 2022

Race & Health is excited to announce a new Lancet Series on racism, xenophobia, discrimination and the determination of health. Join the launch, in-person or virtually, to discuss the pervasive nature of racism, xenophobia, and discrimination on health inequities globally, and what we can do to improve the lives of minoritised people.
 

2nd International Conference on Public Health in Africa 
13-15 December, 2022

The 2nd International Conference on Public Health in Africa will be held in Kigali, Rwanda, and provides an unique platform for African researchers, policymakers and stakeholders to come together and share perspectives and research findings in public health.
 

Webinar: Make way for people with disabilities in SRHR
20 December, 2022

How do you ensure equal access to your Sexual and Reproductive Health and Rights programmes for people with disabilities? Share-Net Netherlands, Liliane Foundation, and the Dutch Coalition on Disability and Development (DCDD) are organizing a webinar on SHRH and disability inclusion. DCDD's newest quick guide will be launched, which offers a wide range of practical tips and tools to ensure inclusion throughout the programme cycle.

 



 



Links

 



Info Hansen - A innovative hub for knowledge sharing about Hansen's Disease
 

ALLF - Official website of the Association des Léprologues de Langue Française
 

LML - Leprosy Mailing List - a free moderated email list that allows all persons interested in leprosy to share ideas, information, experiences and questions
 

InfoNTD - Information on cross-cutting issues in Neglected Tropical Diseases (NTDs)

 


ILEP newsletter archive

GPZL newsletter subscription

WHO Goodwill Ambassador's Leprosy Bulletin

Leprosy Review

Leprosy Review Repository (1928-2001)

Fontilles Revista de Leprología

Indian Journal of Leprosy

Hansenologia Internationalis

 




GDPR & the Infolep newsletter

 
New EU data protection regulations came into force on 25 May 2018. We have been reviewing our practices with regards to the GDPR, including our privacy statement and mailing list.

Infolep sends out monthly e-mails with an overview of recent publications on leprosy and related issues. The purpose of this activity is to keep subscribers up to date.

Infolep will only process the data we have (names, email addresses) for the purpose of sending you the newsletter. We take your security seriously and will never share your contact details with anyone else.

You can update your preferences or unsubscribe from this list at any time.

 


 


LML - S Deepak, B Naafs, S Noto and P Schreuder

LML blog link: http://leprosymailinglist.blogspot.it/

Contact: Dr Pieter Schreuder << editorlml@gmail.com

 

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Friday, December 2, 2022

Fw: Ref.:  (LML) Announcement of two (!) calls for proposals - Leprosy Research Initiative



Leprosy Mailing List – December 2,  2022

 

Ref.:  (LML) Announcement of two (!) calls for proposals - Leprosy Research Initiative

 

From:  Leprosy research Initiative, Amsterdam, the Netherlands



Dear colleagues,


Leprosy Research Initiative (LRI) is pleased to announce our two(!) calls for proposals.



The application portal is now open! The deadline for submission for both calls is January 27th, 2023 at 23:59 (CET), so make sure to submit your Letter of Intent timely.
 



LRI Regular call for proposals – Budget round 2024
LRI is pleased to announce the annual call for proposals for funding commencing in 2024. LRI funds research with a focus on leprosy – including research applications combining leprosy with other neglected tropical diseases (NTDs) or other diseases that share cross-cutting issues with leprosy.  

This budget round, preference will be given to research applications falling under the research priority of 'Transmission', however proposals on all of LRI's research priorities will be considered.



LRI Research capacity strengthening call for proposals – Budget round 2023
The launch is finally here. Alongside our regular grant, we are now introducing the new Research capacity strengthening grant!

Since the start of LRI, one of our main objectives has been strengthening research capacity which we are committed to support further. We are therefore pleased to announce the Research capacity strengthening call for proposals, for funding commencing in 2023, aiming to fund innovative short projects led by early career researchers.  




Submit your Letter of Intent



KInd regards,



Leprosy Research Initiative

Wibautstraat 137k
Amsterdam, NH 1097 DN

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LML - S Deepak, B Naafs, S Noto and P Schreuder

LML blog link: http://leprosymailinglist.blogspot.it/

Contact: Dr Pieter Schreuder << editorlml@gmail.com

 

 


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Friday, November 18, 2022

Fw: Ref.: (LML) Reflections from the 21st International Leprosy Congress (ILC)

 

 

Leprosy Mailing List – November 18,  2022

 

Ref.:  (LML) Reflections from the 21st International Leprosy Congress (ILC)

From:  LRI, Amsterdam, the Netherlands

 

Dear colleagues,


Reflections from the 21st International Leprosy Congress (ILC)


The LRI Secretariat attended the 21st ILC in Hyderabad, India last week; an event of great importance to all involved in the elimination of leprosy.

It was a pleasure meeting many of our grantees, partners and committee members in-person as well as to create new valuable connections with stakeholders in the field of leprosy. Our booth received lots of visitors expressing interest in LRI's work, the research funding opportunities and capacity strengthening activities. We also proudly displayed an overview of the many presentations of LRI-funded researchers sharing their project findings at the physical or online congress, and the prize for 'Best paper' was awarded to one of them: Congratulations to Dr Anuj Mavlankar and team!

In collaboration with the Global Partnership for Zero Leprosy, LRI organised the plenary session "Money matters: Priorities in funding leprosy research" to provide an overview of the research funding landscape in leprosy and encourage synergy and discussion. Our Coordinator, Dr Suzan Trienekens, presented LRI's scope of research support and funding priorities. In addition to presentations of several organisations involved with leprosy research, there were interactions with the audience through online poll voting. We were excited to see that the researchers in the audience voted LRI as the main organisation for their research funding support in the last 5 years.


New calls for proposals: Coming soon!
This year, in addition to our regular call for proposals, LRI is pleased to announce a new call for proposals for funding commencing in the second half of 2023: the Research capacity strengthening grant, aiming to fund innovative short projects led by early career researchers.

Both calls will be launched on the 2nd of December 2022; mark this date in your agenda! Keep an eye on our website for the launch, eligibility criteria and application process and we look forward to receiving your research proposals.


Leprosy Research Initiative

Wibautstraat 137k

Amsterdam, NH 1097 DN

Netherlands
info@leprosyresearch.org


LML - S Deepak, B Naafs, S Noto and P Schreuder

LML blog link: http://leprosymailinglist.blogspot.it/

Contact: Dr Pieter Schreuder << editorlml@gmail.com

 

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Tuesday, November 15, 2022

Fw: Ref.: (LML) Novel approaches in the treatment of Hansen’s disease in the US

 

Leprosy Mailing List – November 15,  2022

 

Ref.:  (LML) Novel approaches in the treatment of Hansen's disease in the US

 

From:  Barbara Stryjewska, Baton Rouge, USA

 

 

Dear Pieter,


I would like to share with the LML readers , the latest publication regarding RMM treatment  as a pre-print.


Novel approaches in the treatment of Hansen's disease (Leprosy): a case series
of multidrug therapy of monthly rifampin, moxifloxacin, and minocycline (RMM) in the

United States. Carlos Franco-Paredes,  Elizabeth Garcia-Creighton, Andrés Henao-Martinez, et al. Ther Adv Infect Dis 2022, Vol. 9: 1–10 DOI: 10.1177/ 20499361221135885


Abstract: The World Health Organization (WHO) recommends multidrug therapy (MDT) for the treatment of paucibacillary and multibacillary forms of leprosy, also known as Hansen's disease (HD). MDT combinations of dapsone, rifampin, and clofazimine have reduced the prevalence of the disease but are not without adverse effects impacting regimen adherence. Hence, an urgent need exists to consider alternative MDT regimens with an improved safety profile that promotes treatment adherence. Herein, we described a case series of 10 patients with HD (nine patients with multibacillary leprosy and one with pure neural leprosy) treated with monthly rifampin, moxifloxacin, and minocycline (RMM). Etc., etc.

 

Sincerely,

 

Barbara M. Stryjewska, M. D.

Chief Medical Officer

Principal Investigator

Clofazimine IND # 67,033

National Hansen's Disease Program

HSB/HRSA/HHS

9181 Interline Ave

Baton Rouge, LA  70809

Ph #: (225) 756-3700

Fax # (225) 756-3706

NHDP Web Site:  http://www.hrsa.gov/hansens-disease/


 

LML - S Deepak, B Naafs, S Noto and P Schreuder

LML blog link: http://leprosymailinglist.blogspot.it/

Contact: Dr Pieter Schreuder << editorlml@gmail.com

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Thursday, November 10, 2022

Fw: Ref.: (LML) Availability of graded nylon monofilaments

 

 
Leprosy Mailing List – November 10,  2022

 

Ref.:  (LML) Availability of graded nylon monofilaments

From:  Robert Jerskey, Carlsbad, USA

 

Dear Pieter,

 

I have quite a large reservoir of the graded nylon monofilaments with me here at the Congress in Hyderabad; available for distribution to the interested NGO or govt organization, or individual present.

 

For very helpful perspective: I refer here to 2 past LML postings that are highly worth a re read, or a first read, for those who missed them:

 

1.  Linda Lehman's February 4, 2017  "Nerve Damage. Disability and deformity.  Prevention and management", advocating for the use of the graded nylon monofilaments, when available.  

It concludes with this statement which she emboldened:

 

"It requires National and local political and professional commitments to include MF within guidelines, training and monitoring activities.

 

The link:

 

Leprosy Mailing List Blog: (LML) Silent neuritis. Nerve damage. Disability and deformity. Prevention and management.

 

2.  Ben Naafs' November 29, 2021 "Detection of nerve damage in leprosy and timely treatment" 

His posting concludes with one word:  "Worried"    

 

The link:

 

Leprosy Mailing List Blog: Fw: Ref.: (LML) Detection of nerve damage in leprosy and timely treatment

 

The interested reader welcome to email me--see below.  

 

I will be here in Hyderabad through Monday.

 

Thank you,

 

Robert

Robert Jerskey, LOTR, consultant for prevention and management of impairments, disabilities, and multiple morbidities

 

robjerskey@yahoo.com

 

 

LML - S Deepak, B Naafs, S Noto and P Schreuder

LML blog link: http://leprosymailinglist.blogspot.it/

Contact: Dr Pieter Schreuder << editorlml@gmail.com

 

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Monday, November 7, 2022

Fw: Ref.: (LML) 3D printed Insoles and shoes for people who have or have had leprosy


 Leprosy Mailing List – November 7,  2022

 

Ref.:  (LML) 3D printed Insoles and shoes for people who have or have had leprosy

From:  Laila de Laguiche     , Paraná, Brazil

 

 

Dear Pieter,

 

I would like to invite LML readers, ILC delegates and e-delegates to watch the video produced by AAL, together with CIOMAL, about 3D printed shoes and insoles for patients who have or have had leprosy. An unprecedented presentation of this technology is now also available to patients affected by leprosy.

Exclusively, the video will be premiered during the International Leprosy Congress, in the SHORT VIDEOS session, in the Exhibition Hall.

From the 12th of November the video can be accessed by everyone with this QRCODE.

 

  I appreciate if you can disclose.

Sincerely

Laila
Alliance Against Leprosy
Curitiba, Parana


LML - S Deepak, B Naafs, S Noto and P Schreuder

LML blog link: http://leprosymailinglist.blogspot.it/

Contact: Dr Pieter Schreuder << editorlml@gmail.com

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Sunday, November 6, 2022

Fw: Ref.: (LML) Persons affected by leprosy have been waiting too long for disability rights: UN expert

 

Leprosy Mailing List – November 6,  2022

 

Ref.:  (LML) Persons affected by leprosy have been waiting too long for disability rights: UN expert

From:  Alice Cruz, Quito, Ecuador

 

 

Dear friends,

 

New Release OHCHR-UN Special Procedures - Human Rights:    Persons affected by leprosy have been waiting too long for disability rights: UN expert

 

NEW YORK (4 November 2022) – Persons affected by leprosy have been waiting too long for their disability rights to be recognised globally and nationally, a UN independent expert told the General Assembly.

 

"Persons affected by leprosy should be fully recognised as persons with disabilities in accordance with the Convention on the Rights of Persons with Disabilities, on the grounds of physical impairments caused by leprosy as well as discrimination based on harmful stereotypes about leprosy itself," said Alice Cruz, UN Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members.

 

"Family members of persons affected by leprosy self-identify as persons with psychosocial disabilities owing to stigmatization and discrimination on the ground of leprosy. Yet, persons affected by leprosy and their family members have been largely excluded from the global conversation about disability", Cruz said in her report to the General Assembly.

 

While acknowledging progress at the national level to recognise equality for persons with disabilities, the Special Rapporteur urged States to do more to effectively implement the provisions of the Convention on the Rights of Persons with Disabilities.

 

Cruz expressed concern that disability rights seem to be restricted to social protection, and decisions on who is entitled to such protection remain largely in the hands of the medical professions. "Recognition of the diversity of persons with disabilities is limited, and more marginalised groups of persons with disabilities, such as persons affected by leprosy and their family members, are overlooked in national policymaking," she said.

 

Furthermore, she expressed concerns about the limited participation of persons affected by leprosy and their representative organisations in institutional matters relating to them, as well as in umbrella organisations for persons with disabilities.

 

In her second report to the General Assembly, Cruz also urged States to double their efforts to protect, promote and fulfil the rights of persons affected by leprosy and their family members by recognising their disability rights and ensuring their participation to policymaking.

 

"States should review the qualification requirements for social protection to ensure access for persons with invisible and psychosocial impairments, as well as for persons with disabilities living in poverty, recognising the additional costs of disability; and ensure a universal basic income for persons affected by leprosy."

 

She also recommended that intergovernmental agencies use leprosy as a case study to fill the evidence gap on the relationship between disability and poverty, and ensure leprosy inclusiveness in intergovernmental agencies and human rights monitoring mechanisms when addressing disability-related issues.

 

ENDS

 

Ms. Alice Cruz (Portugal) was appointed UN Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members in November 2017. Her mandate was extended by three years in June 2020. She has worked as External Professor at the Law School of University Andina Simón Bolívar in Ecuador. Her doctoral work in sociology focuses on the biosocial dimensions of leprosy.

Special Rapporteurs are part of what is known as the Special Procedures of the Human Rights Council. Special Procedures, the largest body of independent experts in the UN Human Rights system, is the general name of the Council's independent fact-finding and monitoring mechanisms that address either specific country situations or thematic issues in all parts of the world. Special Procedures' experts work on a voluntary basis; they are not UN staff and do not receive a salary for their work. They are independent from any government or organization and serve in their individual capacity.

For more information and media requests please contact: Younkyo Ahn (younkyo.ahn@un.org)

For media inquiries related to other UN independent experts, please contact Renato Rosario De Souza (renato.rosariodesouza@un.org) or Dharisha Indraguptha (dharisha.indraguptha@un.org).

Follow news related to the UN's independent human rights experts on Twitter @UN_SPExperts

 

Concerned about the world we live in?
Then STAND UP for someone's rights today.
#Standup4humanrights
and visit the web page at
http://www.standup4humanrights.org


LML - S Deepak, B Naafs, S Noto and P Schreuder

LML blog link: http://leprosymailinglist.blogspot.it/

Contact: Dr Pieter Schreuder << editorlml@gmail.com

 

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From: Leprosy Mailing List <leprosymailinglist@googlegroups.com>
Sent: 06 November 2022 14:58
To: Leprosy Mailing List <leprosymailinglist@googlegroups.com>
Subject: Ref.: (LML) Persons affected by leprosy have been waiting too long for disability rights: UN expert
 

Leprosy Mailing List – November 6,  2022

 

Ref.:  (LML) Persons affected by leprosy have been waiting too long for disability rights: UN expert

From:  Alice Cruz, Quito, Ecuador

 

 

Dear friends,

 

New Release OHCHR-UN Special Procedures - Human Rights:    Persons affected by leprosy have been waiting too long for disability rights: UN expert

 

NEW YORK (4 November 2022) – Persons affected by leprosy have been waiting too long for their disability rights to be recognised globally and nationally, a UN independent expert told the General Assembly.

 

"Persons affected by leprosy should be fully recognised as persons with disabilities in accordance with the Convention on the Rights of Persons with Disabilities, on the grounds of physical impairments caused by leprosy as well as discrimination based on harmful stereotypes about leprosy itself," said Alice Cruz, UN Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members.

 

"Family members of persons affected by leprosy self-identify as persons with psychosocial disabilities owing to stigmatization and discrimination on the ground of leprosy. Yet, persons affected by leprosy and their family members have been largely excluded from the global conversation about disability", Cruz said in her report to the General Assembly.

 

While acknowledging progress at the national level to recognise equality for persons with disabilities, the Special Rapporteur urged States to do more to effectively implement the provisions of the Convention on the Rights of Persons with Disabilities.

 

Cruz expressed concern that disability rights seem to be restricted to social protection, and decisions on who is entitled to such protection remain largely in the hands of the medical professions. "Recognition of the diversity of persons with disabilities is limited, and more marginalised groups of persons with disabilities, such as persons affected by leprosy and their family members, are overlooked in national policymaking," she said.

 

Furthermore, she expressed concerns about the limited participation of persons affected by leprosy and their representative organisations in institutional matters relating to them, as well as in umbrella organisations for persons with disabilities.

 

In her second report to the General Assembly, Cruz also urged States to double their efforts to protect, promote and fulfil the rights of persons affected by leprosy and their family members by recognising their disability rights and ensuring their participation to policymaking.

 

"States should review the qualification requirements for social protection to ensure access for persons with invisible and psychosocial impairments, as well as for persons with disabilities living in poverty, recognising the additional costs of disability; and ensure a universal basic income for persons affected by leprosy."

 

She also recommended that intergovernmental agencies use leprosy as a case study to fill the evidence gap on the relationship between disability and poverty, and ensure leprosy inclusiveness in intergovernmental agencies and human rights monitoring mechanisms when addressing disability-related issues.

 

ENDS

 

Ms. Alice Cruz (Portugal) was appointed UN Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members in November 2017. Her mandate was extended by three years in June 2020. She has worked as External Professor at the Law School of University Andina Simón Bolívar in Ecuador. Her doctoral work in sociology focuses on the biosocial dimensions of leprosy.

Special Rapporteurs are part of what is known as the Special Procedures of the Human Rights Council. Special Procedures, the largest body of independent experts in the UN Human Rights system, is the general name of the Council's independent fact-finding and monitoring mechanisms that address either specific country situations or thematic issues in all parts of the world. Special Procedures' experts work on a voluntary basis; they are not UN staff and do not receive a salary for their work. They are independent from any government or organization and serve in their individual capacity.

For more information and media requests please contact: Younkyo Ahn (younkyo.ahn@un.org)

For media inquiries related to other UN independent experts, please contact Renato Rosario De Souza (renato.rosariodesouza@un.org) or Dharisha Indraguptha (dharisha.indraguptha@un.org).

Follow news related to the UN's independent human rights experts on Twitter @UN_SPExperts

 

Concerned about the world we live in?
Then STAND UP for someone's rights today.
#Standup4humanrights
and visit the web page at
http://www.standup4humanrights.org


LML - S Deepak, B Naafs, S Noto and P Schreuder

LML blog link: http://leprosymailinglist.blogspot.it/

Contact: Dr Pieter Schreuder << editorlml@gmail.com

 

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To unsubscribe from this group and stop receiving emails from it, send an email to leprosymailinglist+unsubscribe@googlegroups.com.
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