Overview
Since 20 September 2021 self-declared 'non-commercial organisations' are no longer required to provide a lobby budget. See above timeline for this registrant's historical lobby budget.
Lobbying Costs
None declared
Financial year: Jan 2022 - Dec 2022
Lobbyists (Full time equivalent)
0.6 Fte (2)
Lobbyists with EP accreditation
0
High-level Commission meetings
0
Lobbying Costs over the years
-
Info
Inspire2Live
EU Transparency Register
272486517947-03 First registered on 23 Jun 2015
Goals / Remit
Getting cancer under control and inspiring people to lead happy and healthy lives in harmony with cancer!
In our mission, we are the patient’s voice in cancer, because there is too little patient’s perspective present in decisions on cancer research, treatments and regulations. And they need our help now. Everywhere, and not only the ones in the future.
Inspire2Live is a patient advocacy organization. The purpose of Inspire2Live is get cancer under control. We believe that this is feasible when patients, physicians and scientists work together to share knowledge, data and inspiration together.Main EU files targeted
- Tobacco file
- Development, patents, market access and reimbursement of new medicines and diagnostics
- Personalised Medicine
- HORIZON and IMI project funding
- broad use of whole genome sequencing in diagnosticsAddress
Head Office
Duwboot 20
Houten 3991 CD
NETHERLANDSEU Office
Noorderakerweg 271B
Amsterdam 1069 LT
NETHERLANDSWebsite
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People
Total lobbyists declared
2
Employment time Lobbyists 50% 1 10% 1 Lobbyists (Full time equivalent)
0.6
Lobbyists with EP accreditation
No lobbyists with EP accreditations
Complementary Information
Inspire2Live werkt volledig met onbezoldigde patient advocates. Daar zij slechts hun reis- en verblijfkosten vergoed krijgen bij hun inzet, blijven de jaarlijkse kosten gemoeid met lobby lager dan men qua omvang zou verwachten.
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
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Categories
Category
Non-governmental organisations, platforms and networks and similar
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Networking
Affiliation
https://inspire2live.org/about-us/the-patients-voice/partners/
Member organisations
None declared
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Financial Data
Interests represented
Does not represent commercial interests
Closed financial year
Jan 2022 - Dec 2022
Lobbying costs for closed financial year
Since 20 September 2021 self-declared 'non-commercial organisations' are no longer required to provide a lobby budget. See above timeline for this registrant's historical lobby budget.
Total organisational budget in closed year
115,340€
Major funding types in closed year
Other, Donations
Funding types "other" information
Major contributions in closed year
None declared
Other financial info
Door de ontvangst van een donatie in 2020 (gerapporteerd in dat jaar, ook verantwoord in het jaarverslag 2020) is er sprake van voldoende liquiditeit om het budget 2022 uit eigen vermogen te financieren.
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EU Structures
Groups (European Commission)
none
Groups (European Parliament)
Artificial intelligence and digital#Cancer
Communication activities
1. Consultancy European Committee on outlines future HORIZON funding
Inspire2Live is taking part in consultancy rounds of the European Committee on the future of HORIZON.
Our view on Horizon and IMI2 partnerships in short:
Active PA involvement has to be part from any initial proposal onwards for an application to even be considered for funding: if about us, not without us!
Change it into an Open Source Pharma Fund to finance projects that consist of:
AI on basis of FAIR ( i.e.in which WGS-data is compared to pharmacogenetics and pharmacogenomics);
Wetlabs (do the AI-outcomes for best treatment work? Registration real life data);
Licensing (IP, FAIR access; fair pricing).
2. Whole Genome Sequencing
We want the best treatment based on Whole Genome Sequencing to become available for everyone. We support an initiative by several MP's in Dutch Parliament to achieve that goal and want to roll out our initiative European wide.
3. IVDR implementationOther activities
None declared
- Meetings
Meetings
None declared
- Meetings