Genetic Alliance of Ghana is an initiative under Rare Disease Ghana Initiative with the aim to bring all rare disease patient organisations in Ghana for every rare disease into one national community to speak with one voice. We are building the rare disease patient movement of tomorrow. Membership is opened to patient organisations and support groups connected to congenital, genetic and rare diseases.
Our collective mission is improving the wellbeing and quality of lives of all those affected by genetic and rare diseases in Ghana, including improved knowledge and awareness, timely diagnosis and prevention (when possible), access to best treatment and care (regardless of where the family lives in Ghana), engagement with supportive community care (volunteer patient-based and established resources), fair access to appropriate therapies based on patient needs, and support for research that builds on Ghanaian expertise and promotes application.
Members of this alliance mutually agrees to:
1. Become a member of Rare Disease Ghana Initiative through the Genetic Alliance of Ghana
2. To be listed on the Rare Diseases Ghana Initiative’s website, brochure and any other Rare Disease Ghana Initiative/ Genetic Alliance of Ghana communication material, as well as its members.
3. Contribute, review and sign up to policy documents
4. Participate actively in Rare Disease Day and Rare Showcase every year
5. Periodically share data and information
• Join a Ghanaian community of rare disease alliances and be part of an increasingly strong voice for rare disease patients in Ghana and across Africa.
• Develop and advocate for common positions to influence or encourage policy that improves the lives of your members.
• Share experience and information on Ghanaian policy on a dedicated online platform.
• Participate in Rare Disease Ghana Initiative’s meetings
• Be listed on the Rare Disease Ghana Initiative website with a direct link to your website