The Member of Parliament showed great interest and openness, emphasizing that the concerns of people with rare diseases will play an important role in her parliamentary work.
The core topics of our foundation were central to the exchange:
- Securing funding for specialized centers, which are essential for diagnosis and treatment,
- Building and expanding national and international registries to make data more usable for research and care,
- Strengthening research, such as through targeted support for orphan drugs and translational approaches,
- and further developing and consolidating the National Action Alliance for People with Rare Diseases (NAMSE) to ensure broad dialogue.
These are issues of vital importance not only for directly affected people in Germany. One thing is clear: there is much to learn from rare diseases for more common conditions as well!
We sincerely thank Ms. Seitz for the engaging and appreciative conversation and for her pledged support. Her commitment sends an important signal that the concerns of rare diseases are receiving visibility and priority in politics. We look forward to continued collaboration.
