Rare disease day is a global event held to raise awareness and support for rare diseases. It is mostly held on the last day of February (so 28 on non-leap years and 29th on Leap years) and promoted by EURORDIS, an international patient-driven alliance of rare disease patient organizations. This year
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
Millionsmissing is a global campaign for Myalgic Encephalomyelitis (ME) health equality. Lead by #MEAction, the first global protest took place in May 2016. By September, 2016, it had grown to 24 cities. This year, the movement has grown – to over 100 cities across the world including Ghana. ME (commonly known
Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. The campaign targets primarily the general public and also seeks to
Rare Disease Ghana Initiative (RDGI) has collaborated with Beyond The Diagnosis formally Rare Disease United Foundation to enroll eligible patients unto 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
On the 28th of February, 2019, Rare Disease Ghana Initiative in collaboration with West African Genetic Medicine Centre with Support from Sickle Cell Disease Genomics Network of Africa (SickleGenAfrica) organised a symposium on Genomics and Rare Diseases in honor of Rare Disease Day 2019. The event which was held at
Knowledge on rare diseases and related disorders are lacking among medical professionals across Africa. Rare Diseases are not integral part of the training of medical professionals in developing countries like most African countries hence making it difficult to identify, diagnose and manage rare diseases. Rare Disease ghana Initiative has collaborated
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