Addressing Rare Diseases through Universal Health Coverage
To mark UHC Day 2020, RDI and EURORDIS invite you to a conversation exploring the link between rare diseases and UHC. Join an interactive dialogue on how the rare disease community is advocating at national, regional and international level to advance UHC programmes that address the challenges faced by people living with a rare disease.
To prepare for the discussion, participants are asked to reflect on the following questions and may share their responses at the meeting:
In your country:
1) Which type of healthcare services are covered?
2) What are the challenges to access Orphan Medicinal Products?
3) Do people living with a rare disease have access to social services adapted to their needs?
4) Do people living with a rare disease pay significant out of pocket expenses for health care?
5) What is your country doing well for rare diseases, and how could it do better?
1. Why should rare diseases be addressed as part of UHC?
Yann le Cam, EURORDIS CEO and RDI Council Member
2. UHC and Rare Diseases: implementation at the regional and national level.
-Experiences from Asia Pacific
-Experiences from Africa
-Open participant dialogue
3. Case Studies: Using the UHC4RareDiseases advocacy campaign tools
- National Alliance, Mexico
- National Alliance, Finland
- International Prader-Willi Syndrome Organisation
Full Agenda: https://www.rarediseasesinternational.org/wp-content/uploads/2020/11/UHC-Day-Webinar-Agenda-3.pdf