Arabian Gulf University (AGU) recently organised a meeting for the CAREFORRARE support group, bringing together patients with rare diseases and their families alongside specialists from Bahrain and around the world. The event aimed to provide emotional and psychological support while raising awareness about the unique challenges faced by this community. Held at the Princess Al Jawhara Centre, the gathering featured international experts who offered valuable insights on improving the lives of those affected and promoting their integration into society.

Ms. Dorica Dan, Vice President of Rare Diseases Europe (Eurordis), shared the Romanian experience in advocating for the rights of patients with rare diseases, discussing how these approaches could be adapted to support families in Bahrain. Clinical psychologist Dr Anne-Marie Brash delivered a lecture on the significance of effective communication between patients and caregivers, emphasising the necessity of comprehensive psychological support to navigate daily challenges.

Speech therapist Rabia Al Shafie presented strategies to assist patients with speech difficulties, highlighting the critical role of early intervention in enhancing their quality of life. Several patients and their families shared personal stories of diagnosis and the hurdles they encountered, illustrating how proper guidance and support can significantly impact their lives.

Dr Cristina Skrypnyk, Head of the Bahrain Rare Diseases Campaign and Associate Professor at the College of Medicine at AGU, highlighted the importance of these meetings in raising awareness and empowering patients and their families. She stated: 

“Through the support group meetings, we aim not only to spread awareness but also to establish a genuine support network for patients and their families, letting them know they are not alone on this journey. The participation of experts and patients in these discussions enhances our collective understanding of rare diseases and drives us toward improving the quality of healthcare provided to them.”

The meeting sparked lively interactions among attendees, with discussions highlighting the importance of acceptance and social support for patients with rare diseases. A central message resonated throughout the event: “Everyone is rare in their own way, and everyone needs support and encouragement in difficult times.”

It is noteworthy that AGU has been committed to raising awareness about rare diseases since 2013. Over the past 13 years, it has conducted numerous scientific forums and awareness campaigns in various settings, including schools and health centres, along with support group meetings that connect patients and their families with the broader social network around them.