Under the patronage of HRH Princess Basma Fatima bint Ali bin Nayef Al Hashemi
The Rare Disease Awareness Association (ORDA) is launched
Amman – September 29, 2025
Under the patronage of HRH Princess Basma Fatima bint Nayef Al Hashemi, the Rare Disease Awareness Association (ORDA) was launched on Monday evening at the Sheraton Hotel in Amman, with a prominent presence of public prosecutors, members of civil society, and representatives of health organizations.
The ceremony opened with the Royal Anthem, followed by a speech by the association’s president, Mrs. Aida Saad Abu Alim, who welcomed the attendees and expressed her pride in establishing the association. She emphasized that the ORDA strike was a true Jordanian community struggle. Abu Alim said, “My personal experience with rare diseases was the driving force behind its establishment, and an association capable of supporting patients and their families, raising awareness among healthcare providers, and working to improve the quality of life and prevent blood diseases.”
Therefore, we must focus on creating a collaborative network to see important patients, healthcare providers, and supporters. They emphasized the importance of promoting shared knowledge and encouraging innovative scientific research in this field.
This included specialized scientific presentations, where the leading specialist, Al-Zyoud, Head of Pediatric Allergies and Rheumatology at Queen Rania Hospital for Children, delivered a highly significant speech, emphasizing that “specialized health associations around the world are an active part of providing psychological treatment to patients, and today’s physicians need to strengthen this local role.”
Regarding the general medicine specialist, Moamen Aqeel, Head of the Department of Pathology and Science at Queen Rania Hospital for Children, highlighted the most prominent challenges facing children, noting that “early diagnosis is the basis for both greater medicine and families, which calls for more effective awareness-raising.”
One of the presentations featured documented videos of patients and their families, highlighting theatrical stories of the challenges and successes in confronting blood diseases in Jordan, leaving a lasting impression on the audience.
The event concluded with a panel discussion featuring a group of leading experts and indices, including Dr. Amal Abu Libdeh, a pediatric neurology consultant at the University of Jordan Hospital and a member of ORDA, and a member of the Jordanian-American Association of Adolescent Psychiatrists (JAPA), who answered questions and inquiries from the audience. Her Royal Highness Princess Basma Fatima bint Nayef Al Hashemi was also honored with two shields of appreciation in recognition of her efforts and support for health and community issues.
It is worth noting that ORDA is the first association of its kind in the Middle East. This is all to ensure that other eyes see a world where every patient with a rare disease shines with a better quality of life and healthcare, along with psychological and financial support that meets their needs.
More details:
Ms. Aida Abu Alim / President of the Association
Telephone number:
+962790251131
+962790695935
+962 7774 1017
