[Note from HIFA moderator (NPW). Thanks Hlawulani for forwarding the latest issue of RDI Newsletter. I have redacted the content to focus on the first item. HIFA members can read the newsletter in full and sign up to receive future issues here: https://mailchi.mp/rarediseasesint.org/rare-diseases-international-newsl... ]
Rare Diseases International Newsletter - October 2021
RDI Newsletter - October 2021
*Welcome to the Rare Diseases International Newsletter. *
*AFRICAN SUMMIT ON RARE DISEASES*
*Rare Disease Ghana Initiative (RDGI), in partnership with RDI, will host the African Summit on Rare Diseases. *
*The African rare disease movement is rising*. Across the continent, patient groups are emerging and driving multi-stakeholder collaborations and actions for a more equitable future for persons living with a rare disease (PLWRD) and their families.
The African Summit will address challenges and barriers to care, as well as innovative partnerships transforming advocacy, research, diagnosis, care and access at the national, regional, and global levels.
*Hybrid event: participants can attend virtually or in-person DATE: *1- 3 December 2021
*VENUE:* Accra (Ghana) and online
Organised by RDGI, the national non-profit organisation leading advocacy for persons living with undiagnosed and rare diseases in Ghana, the event aims to strengthen regional initiatives and networks.
*The programme includes a plenary, with three distinct sessions: *an opening discussion on the national context for PLWRD in Ghana; followed by a panel discussion on the regional state of play in Africa; and a review of global collaborations advancing care, diagnosis, research and access.
*On the final day, participants will roll up their sleeves and develop recommendations to improve care for PLWRD, stimulate regional advocacy, and strengthen international collaborations.*
*DAY 1: WELCOME AND ORIENTATION *
*Welcome and orientation* in Accra
*Digital networking* and co-working platform opens
* DAY 2: PLENARY *
*Full day hybrid event: *
- *Opening Plenary & Keynote Addresses*
Patient advocates and policymakers open the conversation on national, regional and global trends sharing the African context for PLWRD
- *Life with a Rare Disease in Ghana* Discover national policy frameworks and care coordination mechanisms.
- *Regional State of Play* Hear African civil society leaders and clinicians on the environment for PLWRD as well as opportunities to advance equity.
- *Global Collaborations and Initiatives*
Join a discussion on global initiatives with a focus on research, data-sharing, diagnosis, and access.
*Gala dinner and fundraising event in Accra*
* DAY 3: THEMATIC WORKSHOPS *
Thematic workshops with a national, regional, or global focus. Each will develop recommendations and next steps.
*Three parallel workshops: *
- *Care Management and Advocacy - *Clinicians, PLWRD, families and carers
- *Strengthening an African Rare Disease Network* – Regional civil
- *Global and Regional Collaborations* – Multiple stakeholders
Strategic Engagement Manager
Rare Diseases International
Plateforme Maladies Rares | 96 rue Didot - 75014 Paris - France |+33 1 56
53 52 68