Most rare disease patients and their families report feeling isolated and rejected. Hence Rare Disease Ghana Initiative has established the Ghana Rare Family Network as a support group under the Rare Disease Ghana Initiative to provide a sense of community and emotional support to families living with rare diseases in Ghana.
Membership to this network is opened to patients and families living with a confirmed diagnosis of a genetic or rare disorder listed on www.orpha.net and patients currently undiagnosed but present with an unusual clinical phenotype of a known rare condition and seeking diagnosis.
Members benefit from personalised care planning and coordination through the Rare Disease Ghana Initiative’s Patient Care Coordination and Empowerment Program. Members can request for support directly through this program.
Members also benefit from social networking by connecting with others with the same or similar conditions. Rare Disease Ghana Initiative through this network put 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. Ghana Rare Family Network holds educational programs and relevant tools to families to aid in their disease journey.
Rare Disease Ghana Initiative (RDGI) is a national Non-Governmental Organisation made up of a network of professionals, patients and their caregivers who aims to develop, seek wide endorsement and to advocate for the implementation of a plan to support research, education, service development, promote awareness and seek support for individuals affected by rare and genetic diseases in Ghana. Rare Diseases Ghana Initiative seeks to work in partnership and collaboration with government, government agencies, industries, individuals and other non-governmental organizations to develop a National Policy for Rare Diseases in Ghana and to determine strategies for its implementation.
The mission of Rare Disease Ghana Initiative is to improve the wellbeing and quality of life of families affected by rare diseases in Ghana. Rare Disease Ghana Initiative has the vision to be the leading organization for health professionals, patients, caregivers and researchers; serving as the voice for rare diseases in Ghana.
Interested families who would like to join this network should apply by filling this form https://form.myjotform.com/90194761737566 .
Director of Patient Affairs and Engagement
Rare Disease Ghana Initiative
F393 Fourth Otswe St, Accra
055 271 6011