Amman, September 29 (Petra) – Under the patronage of Her Highness Princess Basma bint Ali bin Nayef, the Rare Diseases Awareness Association (ORDA) was officially launched today, Monday.

The association’s president, Aida Abu Alim, expressed her pride in establishing the association, explaining that it was created to meet a real need in Jordanian society.

Abu Alim stated that her personal experience with a rare disease was the main motivation behind founding the association, aiming to support patients and their families, raise awareness among healthcare providers, and work to improve the quality of life for those affected by rare diseases.

She emphasized that the association aims to create a cooperative network linking patients with each other, healthcare providers, and their supporters, stressing the importance of enhancing shared knowledge and encouraging innovative scientific research in this field.

The launch event included specialized scientific presentations, where Dr. Moamen Aqil reviewed the main challenges facing children with rare diseases, noting that “early diagnosis remains the greatest challenge for both doctors and families, requiring more awareness and training.”

Dr. Raed Ziyoud from the Royal Medical Services affirmed that “specialized health associations worldwide have proven effective in providing treatment and psychological and social support to patients, and today we need to strengthen this role locally.”

During the launch, videos documented live testimonies from patients and their families, highlighting touching stories about the challenges and successes in facing rare diseases within Jordan.

It is noteworthy that the ORDA association is the first of its kind in the Middle East and North Africa region, aiming to realize its vision of a world where every rare disease patient enjoys a better quality of life, comprehensive healthcare, and psychological and financial support that meets their needs.

–(Petra)

A.D./H.H.

29/09/2025 21:47:30