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Overview
Lobbying Costs
75,000€
Financial year: Jan 2019 - Dec 2019
Lobbyists (Full time equivalent)
1.75 Fte (5)
Lobbyists with EP accreditation
0
High-level Commission meetings
0
Lobbying Costs over the years
-
Info
European Society for Immunodeficiencies (ESID)
EU Transparency Register
534802738473-92 First registered on 30 Jun 2020
Goals / Remit
The vision of ESID is that of a world in which every child, adolescent and adult with an inborn error of the immune system benefits from both clinical and scientific knowledge allowing them to live their lives to their full potential.
ESID strives is to improve the awareness, diagnosis, treatment and understanding of primary immunodeficiency diseases through education, documentation, promotion of best practice guidelines, research and evaluation of patient outcomes.
To achieve these goals, ESID is committed to work jointly with healthcare professionals, patient organisations, industry and governmental bodies.Main EU files targeted
Participation in the International Society for Primary Immunodeficiencies (IPOPI) call to action on newborn screening.
ESID is one of the driving forces of Screen 4 Rare. Screen 4 Rare is a multi-stakeholder initiative launched by International Society for Primary Immunodeficiencies (IPOPI), International Society for Neonatal Screening (ISNS) and the European Society for Immune Deficiencies (ESID) aimed at exchanging knowledge and best practices on NBS for rare diseases. Its ultimate objective is to ensure all babies born in the EU can have equal access to NBS which can be a life-saving tool for conditions such as SCID.
ESID board members participate in EU public consultations via ERN-RITA and other media.Address
Head Office
Mijnbouwstraat 23
Delft 2628RV
NETHERLANDS -
People
Total lobbyists declared
5
Employment time Lobbyists 50% 2 25% 3 Lobbyists (Full time equivalent)
1.75
Lobbyists with EP accreditation
No lobbyists with EP accreditations
Complementary Information
None declared
Person in charge of EU relations
Data not provided by Register Secretariat due to GDPR
Person with legal responsibility
Data not provided by Register Secretariat due to GDPR
-
Categories
Category
III - Non-governmental organisations
Subcategory
Non-governmental organisations, platforms and networks and similar
-
Networking
Affiliation
http://esid.org/Membership2/International-Alliance-for-PIDs
Member organisations
None declared
-
Financial Data
Closed financial year
Jan 2019 - Dec 2019
Lobbying costs for closed financial year
75,000€
Other financial info
None declared
-
EU Structures
Groups (European Commission)
none
Groups (European Parliament)
N/A
Communication activities
As part of the activities of Screen 4 Rare, the group has met with European Commission officials, Members of the European Parliament and representatives from Permanent Representations of EU Member States. The campaign is on-going and as such the three societies are in close contacts with EU officials (MEPs, their assistants and other EU officials).
In 2019, ESID together with IPOPI and ISNS developed the newborn screening for rare diseases call to action. The call to action was developed based on an event organised in the European Parliament in 2019 and subsequently communicated and supported by 30 Members of the European Parliament. The call to action constitutes the core political objective of the Screen 4 Rare campaign - ensure all babies born in the EU can have equal access to NBS which can be a life-saving tool for conditions such as SCID.
ESID is also regularly participating in IPOPI PID Forums which take place in the European Parliament. The latest took iteration of which took place in December 2019 and saw the President of ESID discussing the medical benefits of newborn screening for rare diseases with MEPs.Other activities
None declared
Meetings
Meetings
None declared