A joint initiative of African partners for the advancement of recognition and treatment of Rare Diseases in Africa

The Aim of Africa-Rare.org To create a common voice for all those affected by rare conditions across Africa. To advocate for patients’ rights to treatment, and improved quality of life. To ensure that no patient is left behind in their right to access quality healthcare Create awareness and raise the profile of rare diseases To ensure our members have access to effective communication, up to date information, support, and networking opportunities.

Members South Africa Botswana Namibia Zimbabwe Kenya Lesotho Tanzania Zambia Ghana Cameroon

Focus Areas Data and Surveillance Support and Stigma Info and Awareness Education Policy Development

Education and Training Year / Item 1 3 5 As a RD Coalition "Investigate online platforms, recording of CME, conference, podcasts. Medtalkz" Implement the online training platforms and use Medical Genetics Education Program (MGEP) Continue online training and update content every 4 years. Introduce an online mentorship to support clinicians all over Africa With Stakeholders "Engage with funders regarding education al materials, Bettercare (palliative care and congenital disorders)" "Release and dissemination of Bettercare palliative care training manual, promotion of bettercare congenital problems. Continued engagement with funders " Translate books into other languages

Info and Awareness Year / Item 1 3 5 As a RD Coalition "Creating centralized online hub for RD online (including toolkit as per above)" "Create + setup crowdfunding Campaign Continue online training and update content every 4 years. Introduce an online mentorship to support clinicians all over Africa With Stakeholders "Do fact find around what toolkits currently exist " Consolidate relationships + explore new potential to grow toolkits Link to African Unions + Other major partners eg WHO Grow our collective voice

Data and Surveillance Year / Item 1 3 5 As a RD Coalition "- Identify common needs between groups- Develop a generic registry model " "Registry workshop (on generic registry tool development to rationalise approach/prevent duplication/share knowledge & expertise "- Adapt existing or develop registry hub- African Alliance for Rare Diseases host?" With Stakeholders "- Identify other relevant stakeholders- Meet with key stakeholders - Identify data needs of other stakeholders (‘sweet spot’)- Research options for a data sharing forum "- Meet with key stakeholders to develop collaboration- Identify funding for registry ‘hub’" - Ongoing collaboration & funding

Support and Stigma Year / Item 1 3 5 As a RD Coalition "- Create directory of groups available- Identify barriers to funding; brainstorm on how to develop" " "- Developing funding call to action - Awareness of services of palliative care" "- Develop a methodology/framework by which current/future SG can run- Palliative care network" With Stakeholders "Introduction to stakeholders & industry " "-Formalise collaboration and network alliances-Funding" "- Assess opportunity to develop social enterprise model for palliative care- Funding"

Policy Development Year / Item 1 3 5 As a RD Coalition "Introductions of stakeholders to RD groups in various countries" "African definition for RDs to be adopted at African Union Level" "Political Change and available funding from a policy level“ - Development of Technical Working Group at AU level With Stakeholders "Introduction to stakeholders & industry " Collaborative efforts planned with stakeholders Resource Mobilization