The two sons of the Benz family from Heerbrugg have Niemann Pick, an extremely rare metabolic disease. The parents have rebuilt the house so that they can continue to come home. The fundraising campaign for the help of Eastern Switzerland has supported it. Full story

Vtesse has sufficient patients enrolled to perform the clinical study phase IIb/III with VTS-270 against the Niemann-Pick disease Typ C1. The company expects to remit the results to the authorities and publish them in 2018. More details under press release.

As Vtesse announced today that the US Food and Drug Administration (FDA) has given its drug candidate VTS 270 for the treatment of Niemann-Pick disease type C1 (NPC) the "Breakthrough Therapy" status. See full article at finanzen.net

Wie heute von Vtesse bekannt gegeben, hat die US-Regierung FDA die Verwendung von VTS-270 für ihre klinischen Studien an Patienten mit der Niemann-Pick-C1-Krankheit (NPC) genehmigt. Ganzer Artikel

Rare diseases are particularly bad for patients and their relatives. Very often the diagnostic follows a long and energy-sapping check-up. After the diagnostic, helplessness follows, because in a majority of cases the science is not enough advanced and the drugs are missing. It is not seldom that the fight against the disease is taken over by relatives, as it happened, for instance, with the Poincilit family. Full story in German

"Mael carefully reads the full sentence in his reading book. The nearly eight-year-old boy from the Canton Lucerne attends the second class. This is a regular class. Except this, everything else is different in Maels life. He has a rare disease. Mael was born on 18 April 2008. As firstborn by happy parents with two younger brothers. Full German report in Mediaplanet.

Because he has a mental disability, Florian Benz cannot live independently. The welfare system isn't designed for people like him. Not yet. Entire article in German

The US pharmaceutical company Vtesse secures additional 17 million US dollars to support further product development and expands the current Cyclodextrin clinical trial for the treatment of NPC patients. Full story in German.

Diagnosis of Niemann-Pick disease: The host couple Appel talks about the rare metabolic disease of their son Maximilian. Full story in German.

"Tomorrow, February 29, is the International Rare Disease Day. Rare sounds associated with diseases as an interesting issue. But rare diseases have disastrous consequences for patients." Full story in German.

Sucampo Pharmaceuticals and Vtesse declared today that Sucampo acquired Vtesse for a down payment of 200 million USD. Sucampo finances this acquisition by the release of 2.782.678 class A common shares and by 170 million USD in available cash. An external financing was not necessary. press release.

"It itches in my brain," said Lili at the age of 6 years. Even then her illness undoubtedly progressed: the mysterious Niemann-Pick syndrome. One of the many ultra-rare diseases which we can not cure. A disease that leads families of patients to their limits. A disease that poses a challenge to our health system. Full story in German.

Marko (17) and his sister Valeria (12) suffer from the deadly metabolic disease Niemann Pick C. All what they could once do is no longer possible, - walking, talking, thinking, swallow. Mother Milijana Petric reported about her daily hopeless life. Full story in German.

The liberal faction leader Ignazio Cassis comments on health insurance lobbying, doctors stop and universal cantonal financing. Full article in the NZZ

Niemann-Pick Selbsthilfegruppe e.V. Germany has a new website https://niemann-pick- selbsthilfegruppe.de/