Most rare disease patients and their families report feeling isolated and rejected. Rare Disease Ghana Initiative has established the Ghana Rare Family Network to provide a sense of community and emotional support to families living with rare diseases in Ghana.
i. Patients and families living with a confirmed diagnosis of a genetic or rare disorder listed on www.orpha.net
ii. Patients currently undiagnosed but present with an unusual clinical phenotype of a known rare condition
Members will benefit from social networking by connecting with others with the same or similar conditions. Patients can interact with each other, share their stories and seek support.
In addition, members benefit from up to date information and training on topics and diseases of interest.
Members also benefit from additional support through the RDGI’s Care Coordination, Empowerment and Support Program.