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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Fw: Ref.: (LML) Diversity and Progress

 

Leprosy Mailing List – November 6,  2022

 

Ref.:  (LML) Diversity and Progress

 

From:  Joel Almeida, Mumbai, India

 

 

Dear Pieter and colleagues,

Diversity of funding sources is critical for progress against HD. It is what keeps us moving forward as the best ideas keep surfacing. Without diversity in funding, and diversity of talent, it is easy to gravitate towards the echo chamber approach. That is where fiction too often can replace fact, and everyone is expected to echo the fiction.

 

The best ideas, the most effective ones, often emerge out of free and open discussion. The worst ones can survive, despite good intentions on all sides, when funding sources are consolidated. That is why diversity of funding is critical in HD and in any field that hopes to progress.

Long may we progress towards the world we want to create: where HD is no longer feared and preferably no longer a threat to the people of endemic countries. Long may we enjoy diversity of funding, diversity of talent and diversity of views. It is from that crucible of diversity that the gold of success generally emerges.

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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From: Leprosy Mailing List <leprosymailinglist@googlegroups.com>
Sent: 06 November 2022 14:57
To: Leprosy Mailing List <leprosymailinglist@googlegroups.com>
Subject: Ref.: (LML) Diversity and Progress
 

Leprosy Mailing List – November 6,  2022

 

Ref.:  (LML) Diversity and Progress

 

From:  Joel Almeida, Mumbai, India

 

 

Dear Pieter and colleagues,

Diversity of funding sources is critical for progress against HD. It is what keeps us moving forward as the best ideas keep surfacing. Without diversity in funding, and diversity of talent, it is easy to gravitate towards the echo chamber approach. That is where fiction too often can replace fact, and everyone is expected to echo the fiction.

 

The best ideas, the most effective ones, often emerge out of free and open discussion. The worst ones can survive, despite good intentions on all sides, when funding sources are consolidated. That is why diversity of funding is critical in HD and in any field that hopes to progress.

Long may we progress towards the world we want to create: where HD is no longer feared and preferably no longer a threat to the people of endemic countries. Long may we enjoy diversity of funding, diversity of talent and diversity of views. It is from that crucible of diversity that the gold of success generally emerges.

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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Fw: Ref.: (LML) LML Session at the coming ILC

 

Leprosy Mailing List – November 6,  2022

 

Ref.:  (LML) LML Session at the coming ILC

 

From:  Ben Naafs, Munnekeburen, the Netherlands

 

Dear LML readers and contributors,


Unfortunately, we have decided, in consultation with the organization to cancel the LML meeting in the ILC program. Due to planning issues, and a covid infection with brain fog on my part, it was not possible to finish all the backlog and preparations. We apologize and I hope to see all the ILC attendees in Hyderabad.

 

With kind regards,

Ben


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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