Rhein-Neckar-Zeitung reports about Milly's mission
Rare Disease Day is intended to draw attention to what it means to live with a rare disease and what problems arise due to rarity in medical care and also in research into these mostly incurable chronic diseases.
NBIA families from our association are also participating in this day of action. At the event in Ulm today there will be an information table on Hoffnungsbaum e.V. and in a lecture our board member Noah Rusch and our association member Tiemo Durm will present the work of our small patient organization in the afternoon.
An article about Emilia (Milly) Nielbock and her family appeared today in the Rhein-Neckar-Zeitung, which also draws attention to the Millys Mission fundraising campaign started by Milly's parents. Milly lives with BPAN, one of the more common variants of the NBIA group of disorders. Click here for the article.
The Milly's Mission website, completely redesigned in time for Rare Disease Day, can be found at here.