Our work

What ORDA has done since its founding, across six areas.

Workshops and lectures on rare diseases for patients, families and doctors — including sessions for general practitioners and residents, and specialised workshops for patients with scleroderma and interstitial pulmonary fibrosis.
Taking part in university lectures and awareness events at Al-Ahliyya Amman University and the Hashemite University.
Taking part in health-awareness events, including the “Smoke-free Ramadan” awareness day.
Producing booklets and printed materials about ORDA, highlighting selected rare diseases to raise knowledge and awareness.
Producing awareness videos with specialist doctors on rare diseases and their diagnosis, and videos in which patients and parents of affected children share their experiences.
Television and radio interviews to raise public awareness and highlight patients’ realities, needs and challenges in Jordan and worldwide.

Workshops and programs for patients with specialised partners — including the Celiac Care Providers Society — on combining medical treatment with psychological counselling, physiotherapy, nutrition, art and music on the road to recovery.
Online Zoom seminars for patients led by psychological counsellors and rehabilitation centres, offering remote support and guidance.
Patient communication channels for sharing experiences, supervised by psychologists, dietitians and doctors.
Connecting patients with private-sector doctors to answer medical questions and provide appropriate guidance.

Formal cooperation agreements with medical labs and health bodies for patient discounts, plus free physiotherapy sessions and psychological consultations with specialised centres.
Working with the private sector to provide free surgeries for patients in need — including reconstructive surgery for a patient after removal of facial cancerous tumours.

Collecting and organizing data on registered rare-disease patients to create a national reference that clarifies patient numbers and needs and supports awareness, planning and service development.

Taking part in international workshops with global health organizations such as IEEPO, to learn from international expertise and exchange knowledge and practice on rare diseases.
Developing cooperation with health bodies, institutions and the private sector to provide services and support to patients and improve the quality of their care.

An official launch ceremony and awareness event for public- and private-sector stakeholders, presenting rare diseases and patients’ needs and challenges in Jordan and globally through videos and presentations.