The European Haemophilia Consortium (EHC) welcomes the European Commission’s proposal for a regulation on quality and safety standards for substances of human origin. The EHC represents European people with rare congenital bleeding disorders, including haemophilia and von Willebrand Disease. For some of these conditions, plasma-derived medicinal products (PDMP) remain the primary source of treatment.
EHC
European Haemophilia Consortium (EHC)
NGO · Belgium · EU Transparency Register 786550013705-85
3
positions filed
in the 583 files tracked
2
legislative files
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 #399 by legislative files engaged — a count of participation, not a measure of influence.
6.5
declared lobbying FTE
self-declared
—
declared costs / yr (floor)
3
EP accreditations
as declared to the register
2014
in the register since
Declares membership of
- Eurordis
- European Patients' Forum (EPF) →
- TRANSFORM Alliance
Self-declared to the EU Transparency Register (snapshot 2 Sept 2026).
- Register category
- Non-governmental organisations
- Registered as
- European Haemophilia Consortium (EHC)
- Head office
- Brussels, Belgium
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
European Haemophilia Consortium (EHC) filed 3 positions between 14 Dec 2020 and 8 Sept 2022, across 2 of the 583 legislative files tracked here, attaching a full position paper 1 time.
2020 · 1 filed2021 · 1 filed2022 · 1 filed
What they argued
The EHC is pleased to see that the revision of the legislation maintains its original objectives, i.e. to ensure safety and quality of blood components as well as to safeguard the health of patients and donors. This is paramount to the rare bleeding disorders community, which in the past has experienced first-hand devastating effects of the lack of provisions ensuring safety and quality of plasma-derived therapies…
The European Haemophilia Consortium (EHC) welcomes the revision of paediatric and orphan medicinal products' regulations. In haemophilia, the OMPR has brought much innovation in the past decade; however, we are disappointed to see that the uptake from the Member States has been variable.
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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.
Showing 5 of 11.
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Everything on this page comes from European Haemophilia Consortium (EHC)’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.