Rare Disease Ghana Initiative
- Vision *: To be the leading organization for health professionals, patients, caregivers and researchers; serving as the voice and coordinating care for rare diseases in Ghana.
- Mission *: To improve the wellbeing and quality of life of individuals affected by undiagnosed and rare diseases in Ghana.
- Thematic Areas *: Human Rights / Droits de l’Homme,Sustainable Development Goals (SDGs) / Objectifs de Développement Durable (ODD),Health Provision / Soins de Santé,Community Development / Développement Communautaire
- Target Group: National / Nationale
- Key Objectives *: 1. To educate and create awareness on rare diseases through workshops, symposiums, conferences, public lectures and community outreach programs. 2. To advocate for equal access to healthcare and social services for people affected by rare diseases in Ghana. 3. To promote and advance research on rare diseases in Ghana. 4. To coordinate care and support for patients and families with rare diseases.
- Core Competencies *: Advocacy / Plaidoyer,Policy Influencing / Influence des Politiques ,Knowledge Management / Gestion des Connaissances,Capacity Development / Renforcement des Capacités
- Government Engagement:
- Major or Current Achievements *: Activities of Rare Disease Ghana Initiative are targeted efforts to promote awareness of rare diseases; develop, seek wide endorsement and advocate for the implementation of a plan to support education, research, service development and increase support for affected individuals and their families. Rare Disease Ghana Initiative has embarked on several awareness and sanitization activities within a few years of existence. The organization has spearhead the honoring of the Rare Disease Day event in Ghana. The first Rare Disease Day which was held in February 2018 was done in collaboration with the Infant school of Ghana International School. This event was featured in the Rare Daily’s (news portal for global genes) and the spring edition of Rare Revolution Magazine. For the second Rare Disease Day which was held in 2019, Rare Disease Ghana Initiative teamed up with Multikids Africa to do face painting campaign with the students of Multikids Academy. In addition, a section of the students at Multikids joined RDGI team to share fliers and leaflets on rare diseases to shoppers at the A&C Mall. In May 2018, RDGI also joined the global community with ME/CFS through a collaboration with ME/CFS SA to host the 'MillionMissing' event for the first time in Ghana. The team from RDGI did a solidarity video which was shared through Social media to show our support to the millions of people missing due to ME/CFS and other invisible illnesses. In addition, RDGI also lit up the building of Impact Hub Accra in purple to support to people living with Invisible illnesses and chronic diseases. This event took place on 17th May, 2018. RDGI has assisted to enroll 2 cases from Ghana on the “Beyond The Diagnosis Art Exhibit”. The focus of the Beyond Diagnosis Art Exhibit is to increase research and raise awareness of rare diseases within the medical community through art. Professional artists from the world donate their time and talent to paint portraits of children living with a rare disease. The portrait then becomes part of a travelling exhibit for medical schools, research institutes and hospitals. RDGI has embarked on several online and social media campaigns and has joined the world through social media to honor the Undiagnosed Day, Dazzle4Rare and Rare Fair 2018. Rare Disease Ghana Initiative served as a media partner to RAREfest2018 hosted by Cambridge Rare Disease Network. Currently Rare Disease Ghana Initiative serves a media partner to the World Orphan Drug Congress Europe 2019 to be held in November, 2019 in Barcelona. Rare Disease Ghana Initiative has engaged on some media campaigns.The Health and Wellness show of Starr 103.5 Fm dedicated the entire month of March 2019 to discuss various rare diseases on their show. During this period, clinicians patients and advocates from Rare Disease Ghana Initiative shared their knowledge and experience with rare diseases. This helped to increase awareness of rare diseases among the general public. Through the stakeholder engagement activities of RDGI, the Executive Director was invited to give a presentation on rare diseases and the Rare Disease Ghana Initiative to the Accra Chapter of the Pediatric Society of Ghana during the March 2018 monthly meeting to increase the interest of the clinicians on rare diseases. The organisation has made presentations to the leadership of some major government agencies and policy makers including WHO Ghana, FDA Ghana, Ghana Health Services, Noguchi Memorial Medical Research Institute, West African Genetic Medicine Center and the Ministry of Gender, Children and Social Protection. Rare Disease Ghana Initiative has collaborated with the West African Genetic Medicine Center and hosted a symposium on Genomics and Rare Diseases at Korle-Bu Teaching Hospital in February 2019. This symposium presented a multi-stakeholder perspective on strategies and plans to improve care for rare diseases in Ghana. In attendance were Heads of Institutions, clinicians, researchers, nurses, students, patients with their caregivers and the general public. Also present were other advocacy organizations such as The Rheumatology Initiative (TRI), Sickle Life and Multikids Africa. Through Rare Disease Ghana Initiative’s educational program which seeks to provide resources to improve knowledge and awareness of rare diseases and related issues, Rare Disease Ghana Initiative has collaborated with FYMCA Medicals Ltd, a UK based organization with a mission to develop improve rare disease education and services for those in the developing world to train medical professionals on rare diseases and related disorders. Through this training, a total of eight health professionals from Ghana have received training in MPS Disorders, Fabry & Gaucher and other metabolic disorders. Rare Disease Ghana Initiative is taking several efforts to end the diagnostic odyssey for families affected by rare diseases in Ghana. Currently, the organisation has received a donation of fifty (50) genetic tests from Illumina Inc through the iHope Program to aid the diagnosis of rare diseases. The organization is collaborating with Care Beyond Diagnosis to pilot an ammonia checker device to aid the diagnosis of Urea Cycle Disorders in Ghana. The organization has also supported some patients financially to undergo some laboratory and radiological investigations in efforts to finding a diagnosis. The organization also provides resources and support to rare disease families to enable them to access therapies. Through this program, the organization has been able to support more than 4 patients to undergo some surgical interventions. Rare Disease Ghana Initiative has partnered with Crowdfrica, a crowdfunding organization based in Ghana to raise funds to support these surgeries. Rare Disease Ghana Initiative is looking forward to launch a national registry for rare diseases in Ghana to improve data by the end of 2019. The organization has received a donation from ClinCapture through Weidley's Wish to support in this regard. Pathways for Rare and Orphan Studies (PROS Foundation) is providing technical support to the organization on the registry program. Rare Diseases Ghana Initiative works in partnership with government agencies, industries, individuals and other non-governmental organizations to promote the cause of rare diseases in Ghana by ensuring that people affected by rare diseases are not left out as we strive to achieve sustainable development goals.
- Functional Board *:
- Number of Board Members *: 19
- List Expertise of Board Members *: Chartered Account, Medical Doctors, Lawyer, Patient, Caregivers, Researchers
- Organisational Strategic Plan *:
- Head of Organisation *: Samuel Agyei Wiafe
- Name of Contact Person *: Mr. Samuel Agyei Wiafe
- Position of Contact Person *: Executive Director
- Number of Staff *: 2
- Number of Males *: 2
- Number of Females *: 0