National Rare Disease Plan Revitalized for Improved Patient Care
Doctors, associations, and patient families are advocating for a national network to improve care for rare diseases in Algeria. This call for action emphasizes the importance of implementing the National Plan for Rare Diseases, which the Ministry of Health reactivated this year after being set aside in 2013. The initiative was highlighted during the first national symposium on myopathies and rare diseases in Algiers, organized by the National Association of Solidarity with Rare Diseases (ANSSMR) and the National Association of Neuromuscular Diseases (AMANA UTHA), in collaboration with the Algerian Association of Neurological Research and the National Observatory of Civil Society.
A key proposal for the plan's implementation is the establishment of a national multidisciplinary commission, including cardiologists, dermatologists, internists, ophthalmologists, and neurologists. This commission would aim to guide patients across Algeria, particularly from the southern regions, to appropriate care. While a full national network is still developing, localized efforts are underway; for instance, a weekly consultation in Cherchell is facilitated by a professor who personally schedules appointments for patients, even those traveling from distant areas like Adrar or Djanet. Additionally, a cardiologist has made services available to neuromuscular patients to reduce diagnostic delays, which can be a lengthy process involving multiple specialists.
Accurate and timely diagnosis is critical, particularly for conditions that can be life-altering, such as scoliosis surgery or respiratory ventilation for relevant patients, or a rare disease treatable with vitamin B2. Professionals underline the necessity of genetic testing for definitive diagnoses, advocating for increased availability of such services and supporting research in this field. The development of genetic research, therapeutic innovations, and anticipated medications in Algeria is expected to improve prognoses for children and reduce mortality rates. This broader effort aligns with the orientations of the President, who has prioritized citizen health, innovation, and the introduction of advanced therapies in Algeria as a major focus of his program.
