Overview
Lobbying Costs
8,000€
Financial year: Jan 2018 - Dec 2018
Lobbyists (Full time equivalent)
6 Fte (14)
Lobbyists with EP accreditation
0
High-level Commission meetings
0
Lobbying Costs over the years
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Info
Inspire2Live
EU Transparency Register
272486517947-03 First registered on 23 Jun 2015
Goals / Remit
The international Inspire2Live Patient Advocates organization inspires people (patients, clinicians and researchers), without limitations, to work together to get cancer under control by 2021 and to lead happy and healthy lives in harmony with cancer. Our Patient Advocates are leading in this process.
We strongly believe that every patient, researcher and clinician can initiate the change they want to see.
Our motto is “Never, ever quit!”
In memory of those who died too young of cancer and to inspire those who are fighting it.
We have a mission:
Getting cancer under control and inspiring people to lead Happy and Healthy lives in Harmony with cancer!
How Do We Operate
Inspire2Live is a patient advocacy organization. The purpose of Inspire2Live is get cancer under control by 2021. We believe that this is feasible when patients, physicians and scientists work together to share knowledge, data and inspiration together. Currently, there is a very unhealthy competition between faculties, research groups and universities. Inspire2Live brings these various parties together with very well-informed patients. In this context we work to optimize the processes so that new ideas, therapies and treatments are more quickly available to patients in the Netherlands but eventually worldwide.Main EU files targeted
- Tobacco file
- Devellopment and patents of new medicines
- Personalised Medicine
- HORIZON and IMI project fundingAddress
Head Office
Noorderakerweg 271B
Amsterdam 1069 LT
NETHERLANDS -
People
Total lobbyists declared
14
Employment time Lobbyists 100% 2 50% 4 25% 8 Lobbyists (Full time equivalent)
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 laag.
Person in charge of EU relations
Mr Herman Otten (Public- & European Affairs)
Person with legal responsibility
Mr Tielo Jongmans (bestuurder)
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Categories
Category
III - Non-governmental organisations
Subcategory
Non-governmental organisations, platforms and networks and similar
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Networking
Affiliation
None declared
Member organisations
None declared
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Financial Data
Closed financial year
Jan 2018 - Dec 2018
Lobbying costs for closed financial year
8,000€
Other financial info
Since all our Patient Advocates involved in our lobby-activities are unpaid volunteers who only get their travelexpenses reimbursed out of the annual budget, The expenses estimated under c, option 1 are quite sufficiant.
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EU Structures
Groups (European Commission)
none
Groups (European Parliament)
None
Communication activities
1. Ban on tobacco sales
Inspire2Live, has in talks with various members of the permanent committee on health of the Dutch parliament given its view on tobacco sales and the infringement it forms on the public right to health.
2. Cancer Centers of Excellence
In 2018 a delegation of Inspire2Live presented a petition to the members of the permanent committee on health of the Dutch Parliament: http://inspire2live.org/news/inspire2live-cancer-treatments-can-really-everything-hospitals-costs-human-lives/.
3. New mandate period of the newly elected European Parliament
The re-shuffle however meant that health and the committee ENVI is no longer within MEP Annie Schreijer- Pierik's scope. However, she kindly introduced us to the MEP of her party that will take her place in ENVI, MEP Esther de Lange. A meeting between her and a few PA’s will follow.
4. 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).
5. 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. By helping to write and supporting this initiative we hope to achieve reimbursement of WGS for everyone who might benefit from WGS as a basis for personalized medicine.Other activities
Inspire2Live is een unieke patiënt advocacy netwerkorganisatie die bestaat uit (ex-)patiënten, medisch onderzoekers, artsen, wetenschappers en farmaceuten op een wereldwijd niveau. Hierdoor kan kennis snel gedeeld worden en benut worden. Op basis van de zo opgebouwde expertise en de expertise binnen ons wereldwijde netwerk, streven wij er naar om daar waar mogelijk ook de Europese Instituties van dienst te zijn bij vraagstukken die aan onze missie raken. Onder andere via contacten met MEP's in ENVI.
Meetings
Meetings
None declared