Alpha-1 Europe Alliance asbl
Budget
€10 — €0
EP Access
0
accredited persons
Staff
1
0.1 FTE
EU Grants
None
Mission & Goals
The object (i.e. the activities) of the Association is to: a) Represent the voice of the European Alpha-1 patient community among European and international stakeholders, b) Advocate for pathways to access to timely diagnosis and the best existing and future treatment and holistic care, c) Foster research on AATD aimed at finding a cure, d) Serve as the European point of contact to support patients’ and experts’ early engagement in R&D and in the design and participation of clinical trials, e) Raise awareness, educate, and train health care providers, specialists, policymakers, and the general public on AATD, f) Support national Alpha-1 patient organisations in strengthening their capacities and reach; g) Gather and analyse statistical data; h) Organise congresses, seminars, workshops and other programs and meetings at international and national levels; i) Issuing publications and be the owner of copyrights and any other intellectual property rights in all media.
EU Legislative Interests
Regulations on - SoHO, especially blood plasma - rare diseases - cross border healthcare - research funding
Communication Activities
- meetings with MEPs - campaigns on public media
Interests Represented
Promotes their own interests or the collective interests of their members
Member Of
EARCO https://www.earco.org/ ERN Lung https://ern-lung.eu/ ERN Rare Liver https://rare-liver.eu/ ELF https://europeanlung.org/en/ EURORDIS https://www.eurordis.org/ ERS Lung Health Group https://www.ersnet.org/advocacy/mep-lung-health-group
Organisation Members
Alpha-1 Plus asbl https://alpha1plus.be/fr Alpha-1 Deutschland https://alpha1-deutschland.org/ Alpha-1 Schweiz https://www.alpha-1.ch/ Alpha-1 Österreich https://www.alpha1-oesterreich.at/ Alpha-1 Italy https://www.alfa1at.it/associazione/ Alfa-1 Norden https://alfa-1.dk/ Longfonds NL https://www.longfonds.nl/ Alpha-1 Foundation Ireland https://www.alpha1.ie/ AA1P Portugal https://www.aa1p.pt/ Asociatia Alfasim Romania https://alfasim.ro/ Alfa1 Espana https://alfa1.org.es/ Alpha1 UK https://alpha1.org.uk/ Lovexair Foundation https://www.lovexair.com/ a list of our members is here: https://alpha1europe.org/national-organizations/
Additional Information
costs for travel and accommodation for visits to Brussels; we have a postal address in Brussels but do not operate an office of our own; a self-employed consultant spending less than 10% of his activities for EU related tasks
Connected Legislation
Commissioner Meetings
No recorded meetings with EU commissioners.