Leprosy Mailing List – August 15, 2020
Ref.: (LML) INFORMA HANSENÍASE (iH)
From: Patricia Deps, Vitória, Brazil
Dear Pieter.
I would like to introduce you and your colleagues to the INFORMA HANSENÍASE (iH) project.
- INFORMA HANSENÍASE is an educational project based on the production and dissemination of information about Hansen's disease for academics, researchers, health care workers, persons affected by Hansen's disease and the general public. It is also a project for the dissemination of ideas and good actions targeted at Hansen's disease and the community.
- INFORMA HANSENIASE has a website www.infohansen.org, a YouTube channel and social networks. It is intended for the dissemination of diverse content through electronic books, scientific articles, essays, opinion, and points of view. We have a space for the community - "I want to hear your voice" - to publish interviews, a virtual exhibition, community service, and a board for information about events.
The iH team:
- We are a team of volunteers, professors and students from the Federal University of Espírito Santo who organized ourselves into groups commissioned to produce quality content on the theme chosen for each edition.
The aim of iH:
- We want to spread the word about what is being done in Brazil and the world to improve the lives of persons affected by Hansen's disease, together with new scientific findings and ethical reflections.
The iH launch content:
- We have opened several channels of communication with people from all over the world and we are striving to have information published whenever possible in four languages: Portuguese, Spanish, English and French.
- We present five updated chapters of the book Hansen's disease in Clinical Practice (Online). Other chapters will be available soon.
- The theme of our first edition of INFORMA HANSENÍASE is stigma.
- Ten articles have been published in the iH Blog, providing information, viewpoints, historical facts, and advocacy and networks against stigma and discrimination experienced by persons affected by Hansen's disease in Brazil and Nepal.
- Articles by experts in rehabilitation, human rights and stigma, and Hansen's disease control during the COVID-19 pandemic.
- In the Community space - I want to hear your voice - we will show stories of two persons affected by Hansen's disease, and talk about the experience of a child who was separated from his parents by the segregationist health policy of the 1960s.
- Interviews with the UN Special Rapporteur on the Elimination of Discrimination against Persons Afflicted by Hansen's disease, recounting her experience in combatting stigma, and setbacks to Hansen's disease control programmes in Brazil and other countries during the COVID-19 pandemic.
- Sailing in unknown seas with a broken compass! This was my impression from reading the opening article of INFORMA HANSENÍASE by Dr. Ben Naafs, which brings an "eye-opening" message to the scientific community.
- I would also like to highlight the contribution from MORHAN's vice-coordinator, who recalls in a creatively-written text the sad moment of his diagnosis, which also includes tips for health professionals about what not to do during the process of communicating bad news to a person diagnosed with Hansen's disease.
- We present "The day I changed my name: Hansen's disease and stigma", and a photographic exhibition of the Pedro Fontes Colony Hospital (or Itanhenga Colony) and Educandário Alzira Bley, located in the state of Espírito Santo (Brazil), accompanied by a text published in the Blog.
- We introduce the Committee for Assistance to the Brazilian Immigrant Afflicted by Hansen's disease - CAIBAH, and invite colleagues and institutions in the international community to build the support network in several countries.
The iH invitation:
- Our project is open to your collaboration, if you have a story to tell us, want to write us something - article, presentation of your book or thesis, interview, display your photos or want to propose us something new, please contact us.
We will soon announce the theme of the next edition.
For official information about the project and the Brazilian participants, please access the link: https://projetos.ufes.br/#/projetos/1780/informacoes
An editorial about the project is attached in Portuguese, French and Spanish.
Patricia D. Deps (MD, MSc, PhD)
Full Professor
Medical School and Posgraduate Programe in Infectious Diseases
Federal University of Espirito Santo
Vitória-ES-Brazil
patricia.deps@ufes.br
+55 27 99999 6390
Patricia D. Deps
Dermatologista
Professora Titular
Departamento de Medicina Social
Programa de Pós-Graduação em Doenças Infecciosas
Centro de Ciências da Saúde
Universidade Federal do Espírito Santo
Vitória-ES-Brasil
ORCID https://orcid.org/0000-0002-9707-1934
CV Lattes: http://lattes.cnpq.br/9820695143683631
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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