Living with a rare disease can be an isolating experience, so Sanofi in Japan have launched a call center and website to provide these patients with support and answers.
The “Tetote Call Center” (Tetote meaning hand-to-hand) is a telephone and email information service for people living with lysosomal storage disorders, a group of rare genetic conditions caused by enzyme deficiencies. Known as ‘orphan diseases’, these disorders, e.g. Fabry, Gaucher, Pompe, and mucopolysaccharidosis I and II, affect only a few thousand people worldwide. In Japan, there are an estimated 1,200 patients among a population of more than 12.6 million.
The path to a diagnosis remains long and difficult, which is why the need for support and information after diagnosis is crucial for patients and their families to not only understand next steps but also to feel less alone.
The call center has a dedicated team of licensed nurses to answer patients’ questions about their disease, possible treatments, social security programs, and contacts for specialized medical institutions and patient associations. The website LysoLife is another source of information on these diseases as well as links to medical centers.