In Europe, associations of patients with rare diseases and patients without association have been united for several years in “Alliances”, such as France with Alliance Rare Diseases or Switzerland with Proraris. By bringing together their strengths, associations and patients can come together, speak with one voice and give more weight to their recommendations, their positions and their demands on their partners and partners, be it the public authorities , Healthcare professionals, health insurance systems and the pharmaceutical industry. Morocco has just followed these examples with the official formation of an Alliance Rare Diseases Morocco, on the eve of the International Day of Rare Diseases 2017.
Following an initiative by the Moroccan Association of Autoimmune and Systemic Diseases, several associations of patients with rare diseases decided in 2016 to regroup in order to work better together, calling in particular a Alliance Rare Diseases Morocco having To bring together all the associations working in this field. This union, at first informal, has just led to the official creation of this Alliance
The establishment of the Alliance
The association “Alliances Maladies Rares Maroc” formed its office and its scientific council on February 18, 2017, during a general assembly bringing together isolated patients and especially nine associations, namely the Moroccan associations: autoimmune diseases and (AMMAIS), hope to overcome lysosomal diseases (Hope VML Morocco), primitive immune deficiencies (Hajar), friends myasthenic (MMAA), SOS Metabolism, spina bifida and associated disabilities (ASBM), Rett syndrome, Mediterranean fever (AMFM) as well as the Autoimmunity Study Group (GEAIM). For all these members and those who would like to join them, it is a matter of organizing themselves into a collective networking movement, respecting the autonomy of each of its members in their own actions.
Diagnostic wandering and difficult access to care for Moroccans
In fact, people with rare diseases encounter all sorts of difficulties in their journey, whether it is to obtain a good diagnosis, information or guidance to the competent professionals. Access to quality care at a lower cost is also a problem. This lack of therapeutic hope creates a psychological isolation badly experienced by the sick as well as by their entourage.
It is estimated that between 5% and 8% of the world’s population will be affected by these diseases, ie at least 1 in 20 people. Taken as a whole, rare diseases affect around 350 million people worldwide and 1.5 million in Morocco. A doctor encounters in his daily practice more this type of pathologies than cases of cancer or diabetes!
Necessity of a national rare disease plan in Morocco
The Morocco Alliance considers it necessary to promote rare diseases as a public health priority in a national plan for rare diseases . It would set out the objectives and measures to be taken, including:
1 / the development of national reference centers for expertise and regional centers of competence for care in sufficient numbers to ensure comprehensive coverage of the territory;
2 / a wider availability of biological diagnostic tests, whereas these tools are still too often unavailable in many hospitals;
(3) better access to certain essential medicines, which are not always expensive (such as Plaquenil for lupus or Ursolvon for primary biliary cirrhosis);
(4) an enhanced training of health professionals in the “world of rare diseases” (it is not possible to know them all!) And, in so doing, to the “culture of doubt” (and Rare disease?), Which would give patients better opportunities for appropriate care.
In total, through the creation of this alliance, patient associations hope to pool their efforts and make themselves heard by the various actors involved so that patients and their relatives can listen to the public recognition of their problems, all too often Unrecognized and underestimated in Morocco. It is by creating places and tools that bring together that the sick can then hope for a better future .
Casablanca, February 26, 2017
Dr Moussayer Khadija
Specialist in Internal Medicine and Geriatrics
President of the Alliance Rare Diseases Morocco (AMRM)
And the Moroccan Association of Autoimmune and Systemic Diseases (AMMAIS)