Stigma and Rare Diseases

IRDiRC - Stigma and Rare Diseases

Introduction

For many People Living with a Rare Disease (PLWRD), stigma is a critical health and social barrier with a high unmet need, and it is expressed in approximately 1 in 3 PLWRD. Contributing to inequality, marginalization, discrimination and exclusion, and highly impacting the access to health, social and community participation and services, stigma is a likely a key contributor to the lower quality of life reported by PLWRD. The Task Force on Stigma aims to articulate the particular facets of stigma that come with rarity and benefit from the learnings and solutions from other domains in which stigma has been a concerted focus of attention (such as HIV or birth defects).

Objectives

  • Identify the State of Play and unlock new knowledge to address stigma to accelerate diagnosis and to enhance equitable care and support;
  • Deliver a survey and white paper to identify technology and human factor solutions;
  • Guide and accelerate co-designed patient driven research that also harnesses the power of technology for inclusivity and scale.

Timeline

Recruitment and assembly of Task Force members (Q1, 2025)

Kickoff meeting (Q2, 2025)

In-person workshop (Q4, 2025)

Members

  • Gareth Baynam – Rare Care Centre, Australia (Co-Chair)
  • Ritu Jain – DEBRA International, Singapore (Co-Chair)
  • Samuel Wiafe – Rare Disease Ghana Initiative, Ghana (Co-Chair)
  • Marc Dooms – Leuven University Hospital, Belgium (Co-Chair)
  • Ahmed-Sherrif Yussif – Rare Disease Ghana Initiative, Ghana
  • Catherine Coveney – School of Social Sciences and Humanities, Loughborough University, UK
  • Claudio Carta – Italian National Institute of Health, Italy
  • Diana Kwast-Hoekstra – VSOP – Patient Alliance for Rare and Genetic Diseases, Netherlands
  • Gregory Fagan – Sanofi, USA
  • Helen Malherbe – Centre for Human Metabolomics, North-West University, South Africa
  • Helene Cederroth – Wilhelm Foundation, Sweden
  • Martina Kawome – Solidarmed/Rare Disorders Zimbabwe, Zimbabwe
  • Matt Bolz-Johnson – EURORDIS, Germany
  • Shirlene Badger – Illumina, UK
  • Angus Clarke – Cardiff University, UK
  • Rayner Tan – Saw Swee Hock School of Public Health, Singapore
  • Hilmi Bolat – Balikesir University, Faculty of Medicine, Turkiye