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.
Read more →
We care for rare
You are not alone on the rare-disease journey
ORDA helps people living with rare diseases and their families connect with those who understand what they face, links them with specialist doctors and supporters, and welcomes every partner who wants to help.
Founded 29 Sept 2024First of its kind in the Middle East & North Africa
I am a patient or family member
Join for free and ask to be connected with a specialist, a service or a supporter.
Ask for support →I am a doctor or provider
Join our network of partner specialists and help a patient looking for someone who understands their condition.
Join the network →I am a supporter or donor
Support or sponsor a patient: tests, treatment, devices or surgery — transparently followed up by ORDA.
Become a supporter →2024Founded — 29 September
The firstin the Middle East & North Africa
6areas of work
Freemembership for patients & families
Understand rare diseases
What are rare diseases?
A rare disease affects a small number of people compared with the general population. Each is rare on its own, but together they touch millions of lives worldwide.
Learn about rare diseases6,000+known rare diseases
~300 millionpeople affected worldwide
72%are genetic in origin
70%of genetic ones start in childhood
How ORDA helps its patient members
Three areas we work on every day to ensure a better life and comprehensive care.
Supporting & empowering patients
Workshops with specialist partners, remote psychological support, and safe patient-to-patient channels supervised by professionals.
Educating patients & families
Lectures, workshops, booklets and videos featuring specialist doctors and patients sharing their experience.
Easier access to services
Agreements with labs and centres for discounts, free physiotherapy and psychological sessions, and referral to specialists.
Connection network
We connect each patient with those who can help
A patient reaches us with a request; we assess the need and connect them with the right doctor, lab or centre — or with a donor who funds treatment or sponsors the case — and we follow up until it is done.
- Private-sector specialists for consultations and guidance
- Discounts at partner labs and health centres
- Free physiotherapy and psychological sessions
- Donors who support or sponsor cases, including free surgeries
News & events
The latest from ORDA and our upcoming events.
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 →Stories from our community
Diagnosed with scleroderma in her mid-thirties, the disease reached her lungs. She found her way through treatment and a new way of living, then founded ORDA so that no one faces a rare disease alone. Her story appears in the Scleroderma International Organization’s 2025 book.
Read the full story →
Who we are
We are The Organization for Rare Disease Awareness (ORDA) in Jordan, the first organization of its kind in the Middle East and North Africa, established on September 29, 2024.
We work to support patients with rare diseases and their families, and to raise awareness among healthcare providers and in the community to ensure a better life and comprehensive care for them.
More about ORDA →We have worked with
Celiac Care Providers Society
Al-Ahliyya Amman University
The Hashemite University
IEEPO
Join ORDA
Choose the membership that suits you.
For patients
Patient membership
Free
- For people with rare diseases and their families
- Priority for connection & support requests
- Workshops, support groups and regular meetups
Working membership
10 JOD / per year
- For those who want to help run ORDA and its programs
- One-time joining fee of 10 JOD
- Participation in the general assembly
- Ongoing support for our mission
Volunteer membership
Free
- Help at events and awareness campaigns
- Translation, design and media
- Accompany and support families
Contact us
We welcome questions from patients, families, doctors and organizations wishing to partner or support.
Send us a message
Write your message and the ORDA team will reply.