Rhein-Neckar-Zeitung reports on Milly's mission

from | February 28, 2019

February 28 is International Rare Disease Day. Numerous events have been taking place around the world for days now to mark the occasion. Media interest is also high.

The aim of Rare Disease Day is to draw attention to what it means to live with a rare disease and the problems that arise in medical care and also in research into these mostly incurable chronic diseases due to their rarity.

NBIA families from our association are also taking part in this day of action. There will be an information table at the event in Ulm today. Hoffnungsbaum e.V. and in the afternoon our board member Noah Rusch and our association member Tiemo Durm will give a presentation on the work of our small patient organization.

An article about Emilia (Milly) Nielbock and her family was published today in the Rhein-Neckar-Zeitung, which also draws attention to the Milly's Mission fundraising campaign set up by Milly's parents. Milly lives with BPAN, one of the more common variants of the NBIA group of diseases. Click here for the article.

You can find the completely redesigned Milly's Mission website in time for Rare Disease Day here.

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