Rare Disease Day in Heidelberg and Ulm 2019
February 28 is once again Rare Disease Day, which is celebrated all over the world. In cooperation with the Alliance of Chronic Rare Diseases - ACHSE e.V., the umbrella organization for rare diseases in Germany, the following events will be held in many German cities to mark the occasion Actions will be held, with the participation of numerous affected persons and their self-help organizations, physicians and scientists.
Representatives of Hoffnungsbaum e.V. take part in events in Heidelberg and Ulm to draw attention to the fate and concerns of people with NBIA and the work of our patient organization.
Cinema performance in Heidelberg
The Gloria cinema in Heidelberg shows on February 24 at 11 am the feature film "Lorenzo's Oil". The film is about a family that is fighting the fate of their son Lorenzo, who suffers from a rare neurodegenerative disease. Lorenzo's father begins his own research in order to be able to help his son.
Markus Nielbock, second chairman of Hoffnungsbaum e.V. and together with his wife Rebecca initiator of the BPAN fundraiser Milly's Mission, has this Event co-organized. He will pay tribute to the Rare Disease Day, briefly introduce the neurodegenerative disease group NBIA and its German self-help organization. Hoffnungsbaum e.V. as well as from personal concern as a father of a 6-year-old daughter with BPAN also some words to the NBIA variant BPAN and Millys mission say.
Action Day of the Center for Rare Diseases (ZSE) in Ulm
At February 28, 2019, 2 - 6 pm, will take place in the Stadthaus Ulm at Münsterplatz 50 a Action day will be held on the occasion of the Rare Diseases Day. Visitors can expect an interesting program of lectures on the topic of medical care for rare diseases. In addition, self-help groups for rare diseases will present their work.
For Hoffnungsbaum e.V. our board member Noah Rusch will participate with an information booth as well as a short presentation about NBIA and Hoffnungsbaum e.V..