As representatives of the rare disease community in Luxembourg, we would like to express our deep concern regarding the positioning of public health in the current MFF proposal. The discontinuation of a dedicated health programmesuch as the existing EU4Health initiativeis a significant threat to critical ongoing and future EU initiatives in Health.
AMR
ALAN Maladies Rares Luxembourg
NGO · Luxembourg · EU Transparency Register 961973546240-11
3
positions filed
in the 665 files tracked
3
legislative files
of 665 tracked
2
with a full position paper
attached to a submission
Counts here are a floor, never a total: they cover the 665 consultation files tracked so far (57,774 submissions, mostly 2021–26), so an organization's real filing history is larger, not smaller.
Who they are
Among the 1106 non-governmental organisations on this site, they rank #408 by legislative files engaged, a count of participation, not a measure of influence.
0.1
declared lobbying FTE
self-declared
< €10K
declared costs / yr (floor)
0
EP accreditations
as declared to the register
2022
in the register since
Declares membership of
- EURORDIS
Self-declared to the EU Transparency Register (snapshot 14 Oct 2026).
- Register category
- Non-governmental organisations
- Registered as
- ALAN asbl-Maladies Rares Luxembourg (ALAN)
- Head office
- Kockelscheuer, Luxembourg
Self-declared to the EU Transparency Register (snapshot 14 Oct 2026); cost bands are floors, not audited totals. Reused under Commission Decision 2011/833/EU.
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Their record over time
ALAN Maladies Rares Luxembourg filed 3 positions between 20 Oct 2023 and 11 Nov 2025, across 3 of the 665 legislative files tracked here, attaching a full position paper 2 times.
2023 · 1 filed2024 · 1 filed2025 · 1 filed
What they argued
ALAN asbl Maladies Rares Luxembourg, the rare disease alliance of Luxembourg supports the objectives of the legislation. However, we see three areas of improvement namely: patient engagement, the concept of unmet needs and pediatric medicine. Patient engagement Although we welcome the initiatives to improve patient engagement as described in the current proposal, we see multiple areas of improvement described below.
ALAN Maladies Rares Luxembourg asbl, the national rare disease alliance of Luxemburg is pleased with the importance given to health and health care by the EU Commission which is illustrated by the unprecedented budget of the current EU4Health Program. Furthermore, we welcome the broad scope of objectives which covers multiple areas which are key for the rare disease community.
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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 25.
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Everything on this page comes from ALAN Maladies Rares Luxembourg’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.