The Power of Diagnosis



Tetote Call Center, Japan

Our first mission in rare diseases is to bring hope. Providing information on lysosomal storage disorders to healthcare professionals, patients and their families, as well as the general public is a key part of this mission, to contribute to the early diagnosis and treatment of these diseases.

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.

Source

  1. Japan Intractable Disease Information Center

Inna, Russia

“I was 26 when my symptoms started and 33 before I was diagnosed with Pompe disease. Knowing what was wrong allowed me to learn how to enjoy every day of my life.”

Charlie, Hong Kong

“After my diagnosis with atopic dermatitis I thought the condition would limit me in my ability to pursue my dreams. But Sanofi’s AD Awareness Campaign showed me that not only can I pursue my dreams, I can even encourage others to pursue theirs!”

Daw Tint, Myanmar

“Before my diagnosis, I couldn’t sleep, I couldn’t eat. My mood became irritated, I became aggressive, not satisfied with myself.”

Mobile Clinics, Algeria

The deployment of mobile clinics allows patients in remote areas without medical specialists to access screening, specialized consultations and to be included in a healthcare system.

Mykhailo, Ukraine

“I simply believed that I had a future ahead, and nothing could shake my faith. I am very grateful to socially responsible businesses that take care of patients when the state is not able to.”