Rare Disease Ghana Initiative has established Genetic Alliance of Ghana with the aim to bring all patient organisations in Ghana for every congenital, genetic and rare disease into one national community to speak with one voice. We are building the genetic and rare disease patient advocacy movement of tomorrow. Membership is opened to patient organisations, support groups and civil society organisations connected to congenital, undiagnosed, genetic and rare diseases.
Our collective mission is improving the wellbeing and quality of lives of all those affected by congenital, undiagnosed, 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.
Mutual Agreements and Benefits
• Join a Ghanaian community of rare disease advocates and be part of an increasingly strong voice for rare disease family in Ghana and across Africa. • Develop and advocate for common positions to influence or encourage policy that improves the lives of persons living with congenital, undiagnosed, genetic and rare diseases. • Periodically share data, experience and information to help improve policies which targets for congenital undiagnosed, genetic and rare diseases. • Participate in Rare Disease Ghana Initiative’s events and activities. • Be listed on the Rare Disease Ghana Initiative website with a direct link to your website