The Interdisciplinary Scientific Committee (ISC) and Patient Advocacy Constituent Committee (PACC) are establishinga Task Force on “Stigma and rare diseases”.
Globally more than 300 million people are living with a rare disease (PLWRD). For many, stigma is a critical health and social barrier with a high unmet need, that is estimated to be an overtly expressed challenge by approximately 1 in 3 PLWRD. Patients experiencing stigma face inequality, marginalization, discrimination, and exclusion which impairs access to healthcare, social and community participation and integration. In most cases, stigma prevents the start or progress of rare disease diagnostic, therapeutic and care odysseys. Several factors have been reported by PLWRD to be directly linked to a lower quality of life: physical, mental, social. This Task Force aims to articulate the particular facets of stigma and benefit from the learnings from other domains in which stigma has been a centered focus of attention in the past, such as HIV and birth defects.
IRDiRC is looking for members to populate this Task Force with the below expertise in one or more of the following areas:
- Mental health experts who work with rare disease patients
- Sociologist(s)
- Global Philanthropy Network representatives
- Representatives from patient organizations
- Social scientists
- Clinicians
- Global Health Organization advisors and/or policy experts (with a focus on human rights)
- Industry representatives (Funding institutions, HTA, infrastructures, etc.)
- Spiritual/religious leaders
The usual time commitment includes monthly 1-hour teleconferences, one face to face workshop (1-1.5 days), regular email correspondence and collaborative working, with the opportunity to co-author peer reviewed article(s).
If you are interested in taking part in this activity, please send a CV, biosketch and letter of motivation clearly describing your expertise to the Scientific Secretariat scientific.secretariat[at]irdirc.org before the 9th February, 2025.
Please add in the subject of your email the reference for this call Ref: TF-Stigma.
Only selected candidates will be contacted.