The Arabian Gulf University (AGU) launched the 12th edition of its annual campaign to raise awareness about rare diseases. The campaign, organised by the university, kicked off with an awareness exhibition at the university in Manama, where the programme for 2024 was announced.
The campaign, first launched in Europe in 2008 and in Bahrain in 2013, aims to educate the community about rare diseases, including methods of diagnosis and available treatments. Rare diseases are often genetic and stem from a disorder in the affected individual’s genetic sequence. Despite there being 7,000 rare diseases, research and pharmaceutical efforts still fall short. The campaign pushes for greater attention and action from the health community to find solutions.
Held in conjunction with the global campaign in February, AGU’s campaign highlights that one in every 20 people worldwide has a rare disease, totalling 7,000 diseases and affecting 300 million individuals.
Dr Cristina Skrypnyk, Head of the Bahraini Rare Disease Awareness Campaign and Genetics Consultant at AGU, Al Jawhara Center for Molecular Medicine, shared that the campaign has made significant strides in raising awareness and providing support to individuals and families affected by rare diseases. By bringing together healthcare providers, families and decision-makers, the campaign has been able to help in addressing the challenges faced by those with rare diseases.
The campaign will feature various events aimed at engaging the community and raising awareness about rare diseases, coinciding with World Rare Disease Day. Activities include an exhibition at the Avenues Mall in Manama on February 24, and on City Center Mall on February 29 featuring awareness interaction with the public and entertainment activities for families. The campaign team will also host a webinar for the “Care for the Rare” support group, discussing the integration of rare disease patients in community and visits to schools and universities to promote awareness and prevention of genetic disorders.
Overall, the Rare Disease Awareness Campaign by the Arabian Gulf University continues to make a positive impact by educating the public, supporting those with rare diseases and advocating for greater attention to this important issue.
