Official launch of the Organization for Rare Disease Awareness
📍 Amman, Jordan
An awareness event for public- and private-sector stakeholders on rare diseases and patients’ needs.
Event details →News & events
The latest from ORDA, and our upcoming and past events.
Podcast “Seriously!”: Aydah Abu Eliem on living with a rare disease
A conversation with ORDA’s president on her personal experience of a rare disease, stigma, and a national rare-disease registry.
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Podcast “Seriously!”: the truth about rare diseases with Dr. Amal Abu Lubdeh
An episode on the causes of rare diseases, consanguinity, genetic testing and the diagnostic odyssey, referring patients to ORDA.
Read more →Al-Rai: half a million people in Jordan may be living with a rare disease
An interview with ORDA’s president Aydah Abu Eliem and Dr. Eman Al-Massad on missing national data and the long road to diagnosis.
Read more →ORDA calls for greater rare-disease awareness on World Scleroderma Day
In Ad-Dustour: a call for faster diagnosis, better care, and a national rare-disease registry in Jordan.
Read more →“My journey with a rare disease”: an article by Aydah Abu Eliem in Mal wa Amal magazine
ORDA’s president tells, in her own words, her journey with systemic sclerosis, from the first symptoms to founding ORDA.
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Aydah Abu Eliem’s story in the Scleroderma International Organization’s book
Published in 2025, “The Stories That Took Years to Be Written” includes the story of ORDA’s founder and her journey with scleroderma. Her page from the book is below.
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Awareness workshops for rare-disease patients and their families
Workshops and lectures for patients and families on rare diseases and how to live with them.
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Awareness events: videos and lectures for the public and private sectors and the local community
Events with videos and lectures introducing rare diseases and patients’ needs.
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Patient support workshops with the Celiac Care Providers Society
Programs combining medical treatment with counselling, physiotherapy, nutrition and art.
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Specialised workshops for people with scleroderma and interstitial pulmonary fibrosis
Awareness workshops and lectures for patients and families, including specialised workshops on scleroderma and interstitial pulmonary fibrosis.
Read more →Nothing in this category yet.
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