Jordan 2 project

Establish national registry for hereditary bleeding disorders

Partner institution
Jordan University Hospital, Amman

Represented by
Prof Abdalla S.S.Awidi, MD

Duration
3.5 years, Q3 2009 – Q2 2013

Status
Completed

Objectives

• Establish a national registry of hereditary bleeding disorders based on international standards
• Perform educational programme for healthcare professionals and people with haemophilia

Achievements

• Training of haematologists & medical students
• 78 families received counselling leading to the identification and education of 15 carriers
• 83 people with haemophilia and family members participated in training activities
• > 400 people with haemophilia had their diagnosis confirmed and 261 had their mutation studied
• Creation of national bleeding disorders software and registry

“The most difficult part about my son’s haemophilia was that my husband and I were constantly on the edge of our seats. It was really difficult. Every single time the phone rang, my heart skipped a beat.  Now I feel that we all would be able to handle an emergency much better,”  patients’ mother and workshop participant