IPOPI is very pleased to announce that a 67th National Member Organisation (NMOs) has joined our fast-growing global family, this time from Tunisia. Following the African Patients’ Meeting in Dakar, in April, the NMO ATun DIP has successfully applied for associate membership in May 2019. IPOPI Board of Directors and staff wishes to extend a warm welcome to the new patient organisation and are looking forward to collaborating closely with them in the future. Below is an overview of the first steps taken by the organisation.
ATun DIP’s first steps – by vice president Mariam Fourati
In Tunisia, PIDs are more common than in the rest of the world. Our country and other Middle East and North-African countries are unique with regard to high prevalence of consanguinity in the general population, varying between 20 and 50% of all marriages. Access to specialist care is a problem in many countries and several efforts have been made with clinicians and the referral PID immunology center in “Institut Pasteur de Tunis” to improve the diagnosis of PIDs in Tunisia.
Patient organisations have a significant role to play in health-care systems and are increasingly key stakeholders in the political decision-making processes in healthcare. Thus, each country should aim to have an efficient national patient organisation.
Better late than never, in February 2019 ATun DIPs (Tunisian Association of patients with Primary Immune Deficiencies) was created with the support of clinicians (Prof Tahar Sfar from Mahdia and Prof Mongia Hachicha from Sfax) and immunologist Prof Ridha Barbouche, from the referral PID immunology center.
ATun DIPs is progressing step by step. The first goal of our organisation is to work on patient and family awareness in order to inform and educate them about PIDs and the risk of consanguineous marriages. Then we should break the barriers between parents/patients and medical professionals. We sought to hear the parents/patients’ problems, give them appropriate information, share knowledge with them and emphasize the need for an early diagnosis as soon as PID is suspected and for better access to treatment for all patients whatever the region they live in.
The second action was the participation of a representative of ATun DIPs at the 6th Congress of the African Society of Immune Deficiencies (ASID) from 10 to 14 April 2019 in Dakar, Senegal, in the dedicated IPOPI section. This was a great opportunity to meet leaders of IPOPI and peers from other associations in Africa, learning from success stories, discussing the problems, trying to solve them, sharing experiences with each other and discussing collaborations. The ASID-IPOPI African PID Patients Meeting offered us a lot of knowledge and guidance on how to use that knowledge to solve the issues we face in Tunisia.
The third action was our approval as new member in the global IPOPI family in May 2019. This recognition as an IPOPI NMO will give us the visibility we need locally and at the international level and will help us in our future activities.
*ATun DIPs founding members are: Mohamed Habib SELMI (President), Mariam FOURATI (Vice President), Nabil BENHADJ HAMIDA (General secretary) and Chedlia HAJ MABROUK (Treasurer).
* https://www.atundips.tn/ website of a project funded by the Monaco-Directorate for International Cooperation, that will contain information about the association activities.