Amman, Sept. 29 (Petra) – Under the patronage of Her Highness Princess Basma bint Ali bin Nayef, the Organization of Rare Disease Awareness (ORDA) was officially launched Monday in Jordan.

The organization's Chairperson, Aida Abu Elaim, expressed pride in establishing ORDA, noting that it addresses a genuine need within Jordanian society. Abu Elaim highlighted that her personal experience with a rare disease was the primary motivation behind founding the association, aiming to support patients and their families, raise awareness among healthcare providers, and improve the quality of life for those affected.

Abu Elaim added that ORDA seeks to create a collaborative network connecting patients with each other, healthcare providers, and supporters, emphasizing the importance of shared knowledge and encouraging innovative scientific research in the field.

The launch ceremony featured scientific presentations, with physician Momen Aqeel outlining the major challenges facing children with rare diseases, stressing that "early diagnosis remains the greatest challenge for both doctors and families, necessitating increased awareness and training." Raed Zyoud, a physician from the Royal Medical Services, noted that specialized health associations worldwide have proven effective in providing medical, psychological, and social support to patients, underscoring the need to strengthen such efforts locally.

The event also included videos documenting real-life testimonies of patients and their families, highlighting compelling stories of challenges and achievements in managing rare diseases within Jordan.

ORDA is the first organization of its kind in the Middle East and North Africa, aiming to realize its vision of a world where every patient with a rare disease enjoys a better quality of life, comprehensive healthcare, and adequate psychological and financial support.

//Petra// AF