To raise awareness, educate the public, and advocate for multi-stakeholder action on rare diseases, the Ministry of Health (MoH), in collaboration with the Rare Disease Ghana Initiative (RDGI), has launched the 18th International Rare Disease Day.
According to Rare Disease International, rare diseases affect millions of people worldwide, with over 300 million individuals impacted globally, including many Ghanaians. Many rare diseases are genetic in origin and primarily affect children.
In an address read on behalf of the Chief Director of the Ministry, Alhaji Hafiz Adam acknowledged the challenges faced by individuals living with rare diseases and reaffirmed the Ministry’s commitment to addressing their needs under the National Health Policy.
He noted that despite these commitments, many individuals with rare diseases struggle with limited access to proper diagnosis, treatment, and care due to a lack of awareness and resources.
Emphasizing the need for collective efforts to ensure that every Ghanaian, regardless of their medical condition, receives dignified healthcare, he assured the public that the Ministry is committed to addressing challenges and providing the necessary support, resources, and care for those living with rare diseases.
Prof. Ebenezer Vincent Badoe, an Associate Professor at the University of Ghana Medical School (UGMS) and a paediatrician at Korle Bu Teaching Hospital, noted that while infectious diseases are decreasing, genetic disorders and speech and language impairments are becoming more prevalent.
He called for increased investment in genetic healthcare infrastructure, research, and education to improve diagnosis and management of these emerging health challenges.
The executive director of the Rare Disease Ghana Initiative (RDGI) Samuel Agyei Wiafe, appealed to the government to review existing laws and policies, expand social support programs, develop a national rare disease registry and train health professionals to address the needs of persons living with rare disease.
Some stakeholders, including healthcare professionals, policymakers, and advocacy groups, such as the Scoliosis Foundation Ghana, paediatric society of ghana, Ghana Association of persons with albinism, Hemophilia society of ghana among other stakeholders were encouraged to work together to bridge the gaps in the the healthcare to improve the quality of life for those affected by rare diseases in Ghana.
Source:Mybrytfmonline.com
