Fundacja SMA welcomes the reform of the EU pharmaceutical legislation, seeing many of the proposed changes as an ambitious tool that will improve the development of, and access to, treatments for rare disorders. That said, wed like to share a few comments (see attached document).
FS
Fundacja SMA
NGO · Poland · EU Transparency Register 473240451488-12
1
position filed
in the 583 files tracked
1
legislative file
of 583 tracked
1
with a full position paper
attached to a submission
Counts here are a floor, never a total: they cover the 583 consultation files tracked so far (42,224 submissions, mostly 2025–26), so an organization's real filing history is larger, not smaller.
Who they are
Among the 964 non-governmental organisations on this site, they rank #786 by legislative files engaged — a count of participation, not a measure of influence.
0.9
declared lobbying FTE
self-declared
—
declared costs / yr (floor)
1
EP accreditations
as declared to the register
2023
in the register since
Declares membership of
- EURORDIS
- TREAT-NMD
- SMA Europe
- Polskie Forum ORPHAN
Self-declared to the EU Transparency Register (snapshot 2 Sept 2026).
- Register category
- Non-governmental organisations
- Head office
- Warszawa, Poland
Self-declared to the EU Transparency Register (snapshot 2 Sept 2026); cost bands are floors, not audited totals. Reused under Commission Decision 2011/833/EU.
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Their record over time
Fundacja SMA filed 1 position on 8 Nov 2023, across 1 of the 583 legislative files tracked here, attaching a full position paper 1 time.
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