About ORDA
Who are we?
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.
We invite all patients to join us so that we may be their voice and a beacon of hope for their full rights to healthcare.
Vision
A world where every person with a rare disease has a better life, comprehensive care, and a voice that is heard.
Mission statement
Rare Disease Awareness seeks to empower patients with rare diseases by creating a collaborative network that connects them with each other, their healthcare providers and their advocates. Through shared knowledge, support for innovative research and advocacy, we strive to raise awareness, improve quality care for patients with rare diseases and ensure that every patient’s voice is heard.
Leadership
Aydah Saad Abu Eliem
Founder & President
Aydah Abu Eliem is a dedicated educator and community leader with nearly three decades of experience at the Jordanian Ministry of Education. She earned a BA in English Literature from Yarmouk University in 1994 and, in 2021, an MA in Language, Culture and Communication from the Faculty of Foreign Languages at the University of Jordan. From 1995 to 2010 she taught generations of students with a passion for language and learning, before continuing her service as an administrator at the Ministry until her retirement in July 2024.
She is also the founder and president of The Organization for Rare Disease Awareness, where she brings her leadership and empathy to supporting individuals and families affected by rare diseases — raising awareness among patients’ caregivers and healthcare providers alike. Her work reflects a lifelong dedication to empowerment, inclusion and meaningful change.
Board of directors
Aydah Saad Abu Eliem
Chair of the Board
Dr. Aseel Abu Jamous
Vice ChairPhD in human nutrition and dietetics; clinical nutritionist and researcher with experience in clinical research and nutrition.
Dr. Eman Al-Massad
Secretary of the BoardClinical pharmacist and health economist; assistant professor at the Institute of Public Health, University of Jordan.
Ataf Al-Omoush
TreasurerJordanian chef and entrepreneur; BA in Business Administration from the University of Jordan and a diploma in culinary and pastry arts.
Rahaf Al-Omoush
Board memberBachelor of Medicine.
Founding members
Aydah Saad Abu Eliem
MA in Language, Culture and Communication
Dr. Ahmad Mahmoud Al-Ghananim
BSc in Pharmacy
Dr. Munir Taleb Shawaqfeh
Anaesthesia, intensive care and pain management
Dr. Manal Suleiman Al-Mashaleh
Senior Consultant, Internal Medicine; Senior Consultant Rheumatologist
Dr. Tamam Mohammad Al-Olaimat
PhD in Pharmacy
Sanaa Saeed Haddad
M.Sc. in ICT in Education
Eng. Manal Imad Abu Khalaf
BSc in Engineering and Clinical Nutrition
Dr. Abdeljaber Moh'd Ahmad Almasoud
Anaesthesia, intensive care and pain management
Legal status & governance
ORDA is a registered Jordanian association, governed by its statute and the Societies Law in force.
- Founded
- 29 September 2024, the date of the registration certificate
- Official launch
- 29 September 2025
- Approval
- Societies Registry Board Decision No. 2023/22 of 6 December 2023 approving the establishment of the association
- Headquarters
- Amman, Wadi Al-Seer district
- Geographic scope
- The Hashemite Kingdom of Jordan
- Field of work
- Chronic diseases (4-2): medical and health-care services, and awareness of rare and chronic diseases
- Nature
- Voluntary and non-profit, serving all citizens equally, with no political or sectarian aims
- Governance
- A general assembly that meets at least once a year, and a five-member board it elects for four years
- Financial transparency
- Financial year 1 Jan – 31 Dec, with an annual audit by a certified auditor
- International memberships
- Full member of Rare Diseases International (RDI) and the World Patients Alliance (WPA)
Be part of the network
Patient, doctor or supporter — there is a place for you at ORDA.