EURORDIS-Rare Diseases Europe welcomes the EU Biotech Act as a pivotal opportunity to establish the EU as a leader in biotechnology, particularly through a focus on rare diseases (RD). With 30 million people affected by RDs across Europe, and only 6% of these conditions having approved treatments, the field represents both a significant public health challenge and a strategic area for biotech innovation.
ERD
EURORDIS-Rare Disease Europe
NGO · France · EU Transparency Register 93272076510-87
2
positions filed
in the 326 files tracked
2
legislative files
of 326 tracked
2
with a full position paper
attached to a submission
Counts here are a floor, never a total: they cover the 326 consultation files tracked so far (29,503 submissions, mostly 2025–26), so an organization's real filing history is larger, not smaller.
Who they are
Among the 784 non-governmental organisations on this site, they rank #347 by legislative files engaged — a count of participation, not a measure of influence.
4
declared lobbying FTE
self-declared
€400K+
declared costs / yr (floor)
3
EP accreditations
as declared to the register
2011
in the register since
Declares membership of
- External networks:
- EUROPEAN MEDICINES AGENCY (COMP
- PDCO
- EnprEMA
- PRAC
- PCWP
- SAWP
- CAT
- EU Clinical Trial Information system
- Topic Group on Patient Experience Data
- Advisory Group on Real World Evidence
- Network Data Steering Group
- and 62 more
Self-declared to the EU Transparency Register (snapshot 30 Aug 2026).
- Register category
- Non-governmental organisations
- Registered as
- EUROPEAN ORGANISATION FOR RARE DISEASES (EURORDIS)
- Head office
- Paris, France
Self-declared to the EU Transparency Register (snapshot 30 Aug 2026); cost bands are floors, not audited totals. Reused under Commission Decision 2011/833/EU.
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Their record over time
EURORDIS-Rare Disease Europe filed 2 positions between 9 Jan 2024 and 11 Jun 2025, across 2 of the 326 legislative files tracked here, attaching a full position paper 2 times.
2024 · 1 filed2025 · 1 filed
What they argued
EURORDISRare Diseases Europe is a non-profit alliance of over 1000 rare disease (RDs) patient organisations working together to improve the lives of 30 million people living with a RDs in Europe. A EU public health priority due to the unmet needs of RD population, added value of the EU action, RDs have been consistently supported by EU funding programmes, thus helping improve lives of people with RDs, advance…
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Turns up on the same files
Organizations that also filed on at least two of the same consultations. A shared interest in the same dossiers — not evidence of coordination, and we do not suggest any.
- Childhood Cancer International - Europe · 2 files in common
- European Society for Paediatric Oncology (SIOP Europe, or SIOPE) · 2 files in common
Is this your organization?
Everything on this page comes from EURORDIS-Rare Disease Europe’s own submissions to the European Commission — we have added nothing and interpreted nothing. If something is wrong or out of date, email info@policyspeak.com and we will correct it. If you are an individual named in a record, our privacy policy sets out your rights to correction, objection and removal.
Quotes are verbatim from submissions published by the European Commission, trimmed to their opening passage and never summarized by a model. Organizations only, never individuals. Reused under Commission Decision 2011/833/EU; the European Commission is not liable for this reuse.