December 21, 2016
Hajar – driving change in Morocco
Hajar is the Primary Immunodeficiencies (PID) patient group in Morocco but it was also the name of a young PID patient who gave us the inspiration to start the group.
In the year 2000 a little girl named Hajar urgently needed a Bone Marrow Allograft to cure her severe PID but due to absence of means to get treated abroad Hajar sadly passed away. A group of dedicated people decided to take on the challenge to start a patient group. Hajar united us to create the association Hajar, today we fight for children with PIDs. Hajar’s members are parents of children with PID, specialised doctors and volunteers.
Since its start Hajar has accomplished a lot! Our activities are orientated into 3 fronts: social support and general awareness, scientific research and international partnerships.
We organise general awareness campaigns for the general public and for doctors on a steadily basis and we cover 80% of the medicines given to Moroccan PID patients. We work a lot in partnership with Hospital of children CHU Ibn Rochd in Casablanca and contribute to the improvement of PID care.
On October 19 the association worked together with medical students and the company Toy Triangle to celebrate Achoura, a religious Arabic festival where children receive toys. Actress Samia Akariou and singer Ghani Kebba also participated for the enjoyment of the children and helped raise more PID awareness in the general public. You can watch the video report here
Medical awareness
Recently, Hajar was been involved in the creation of the African PID medical society, ASID, and has helped organise several meetings. We also worked towards the creation of ARAPID, a network dedicated to improve collaboration between Arabic healthcare providers.
Hajar is keen on bringing the experience from other countries to the Moroccan parents of children with PID which can be beneficial to the development of our national care so we work closely with other patient organisations. We have partnerships with the French Association of Patients with PID, IRIS, and with the International Patient Organisation for Primary Immunodeficiency IPOPI.
Hajar has several projects in the pipeline. The most prominent one is the construction of a specific unit for PID transplant in Morocco. This will ensure that even the more severe cases of PIDs can have access to treatment.
There is still a of work to be done to make PIDs better known among the medical community and we are committed to be part of the change!
