February 28th shed light on Rare Disease Day, an international day dedicated to raising awareness about rare diseases. Rare diseases are only considered rare when they affect less than one person in 2,000 individually. In total, there are an incredibly large number of rare diseases, with approximately 7,000 rare pathologies identified. Due to their complexity and rarity, rare diseases can sometimes be challenging to diagnose and manage. To this end, MaRaVal has been providing expertise in this field in the French-speaking Valais region since 2017, and as of March 2023, they will also be available in the Upper Valais. In conjunction with Rare Disease Day, The Sense is partnering with MaRaVal to raise awareness about these rare diseases.
MaRaVal
MaRaVal was founded in 2017 by Christine de Kalbermatten, a pharmacist who was directly affected by rare diseases as her daughter is affected by a very rare disease. The association’s goal is to raise awareness about rare diseases among a broad audience. The association’s offering covers areas of support, coordination, training, awareness, and expertise. It includes individual and group support, as well as personalized advice. Tailored training and information offerings aim to improve knowledge and recognition of rare diseases, increase the skills of all actors, and strengthen the autonomy of patients, as well as supporting caregivers in their role.
The Sense – Research
The Sense Innovation and Research Center can rely on the expertise of its societal advisory board members (including MaRaVal) to identify societal issues. These issues may be the subject of research that could lead to innovations to address these societal challenges.
Training – Haute Ecole de Santé
In collaboration with the Haute École de Santé of HES-SO Valais-Wallis, MaRaVal has set up an Advanced Studies Certificate (CAS) devoted to coordination in the field of rare diseases. This certificate is open to all health professionals, as well as those affected by rare diseases and their families. The training is offered in French and German. The next German-speaking edition of this CAS will start on August 29, 2023, and the registration deadline is set for June 23, 2023.