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, many German cities will be hosting events to mark the occasion. Actions The event is attended by numerous patients and their self-help organizations, doctors 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 screening in Heidelberg
The Gloria movie theater in Heidelberg shows on February 24 at 11 a.m. the feature film "Lorenzo's Oil". The film is about a family fighting the fate of their son Lorenzo, who suffers from a rare neurodegenerative disease. Lorenzo's father begins to do his own research in order to help his son.
Markus Nielbock, second chairman of Hoffnungsbaum e.V. and initiator of the BPAN fundraising campaign together with his wife Rebecca Milly's missionhas this Event co-organized. He will pay tribute to Rare Disease Day in advance, briefly introduce the equally rare neurodegenerative disease group NBIA and its German self-help organization Hoffnungsbaum e.V. and will also say a few words about the NBIA variant BPAN and Milly's mission from his personal experience as the father of a 6-year-old daughter with BPAN.
Action day of the Center for Rare Diseases (ZSE) in Ulm
On February 28, 2019, 2 - 6 pm, will take place in the Stadthaus Ulm at Münsterplatz 50. Action day on the occasion of Rare Disease Day. Visitors can expect an interesting program of lectures on the topic of medical care for rare diseases. Self-help groups for rare diseases will also be presenting their work.
For Hoffnungsbaum e.V. our board member Noah Rusch is participating with an information stand and a short presentation on NBIA and Hoffnungsbaum e.V..
