Children's Tumor Foundation Europe
Acronym: CTF Europe
General Information
Identification Code: 364424439411-39
Website: [object Object]
Entity Form: Foundation of Public Utility
Registration Category: Non-governmental organisations, platforms and networks and similar
Registration Date: 9/3/2020
Last Update: 2/9/2024
EP Accredited Number: 0
Mission & Interests
Goals: The Children’s Tumor Foundation Europe (CTF Europe) is a Belgian Foundation of Public Utility, a non-for-profit medical foundation dedicated to revolutionize the field of neurofibromatosis (NF) research with the aim to accelerate treatments for NF Patients. CTF Europe is a partner of the United States based Children’s Tumor Foundation (CTF). There are three types of NF: NF1, NF2 and Schwannomatosis. They affect about 250,000 Europeans, or over 2.5 million people worldwide and impact all populations, genders, and ethnicities equally. NF causes tumors to grow on nerves throughout the body and can lead to blindness, deafness, bone abnormalities, disfigurement, learning disabilities, disabling pain and cancer.
Interests Represented: Does not represent commercial interests
Interests:
- Education and training
- Public health
- Research and innovation
- Youth
Levels of Interest:
- global
Activities
Main EU Legislative Proposals: Horizon Europe (incl. Cancer Mission Board), Innovative Medicines Initiative, Innovative Health Initiative, Rare Disease Policies (incl. European Reference Networks), Cancer related Policies, Europe's Beating Cancer Plan, Pharmaceutical Strategy, Orphan Medicinal Products Regulation, Paediatric Regulation, Clinical Trials Legislation.
Communication Activities: CTF Europe aims to drive research, expand knowledge, and advance care for the NF community. It also envisages to raise awareness on NF in Europe and to demonstrate the important role NF research can have not only for prevalent cancers (e.g. breast, lung cancer) but also on other rare diseases. In addition, CTF Europe focuses on creating EU-wide and worldwide transnational connections to leverage the global investment in NF research & development.
CTF Europe is also a beneficiary of the Transnational Giving Europe network that facilitates tax efficient cross-border donations.
https://www.transnationalgiving.eu/
CTF Europe collaborates with CTF US to expand the US NF Registry where NF patients can take an active role in the search for better treatments for all forms of NF.
https://www.ctfeurope.org/understanding-nf/nf-registry
CTF Europe collaborates with CTF US (who provides in-kind contribution) on an Innovative Medicines Initiative project, called the EU-Patient-cEntric clinical tRial pLatforms (EU-PEARL). The project aims to shape future clinical trials that will be more patient friendly by design and patient focused by outcome in four diseases areas: Major Depressive Disorder, Tuberculosis, Non-Alcoholic Steatohepatitis and Neurofibromatosis; and provide the framework for designing and executing Integrated Research Platforms in other disease areas.
https://eu-pearl.eu/
In preparation for the clinical trials network in Europe and to improve/standardise the clinical care of patients with all forms of neurofibromatosis, CTF Europe established the Clinical Care Advisory Board comprising of European neurofibromatosis expert clinicians.
https://ctfeurope.org/who-we-are/clinical-care-advisory-board
May is NF awareness month where the NF Community can drive awareness educate those around them and support raise money to support research that will lead to effective treatments for neurofibromatosis.
https://www.ctf.org/get-involved/shine-a-light
Inter-institutional or Unofficial Groupings: N/A
Head Office
Address: Avenue du Port 86C, box 204
Post Code: 1000
City: Brussels
Country: BELGIUM
Phone: [object Object]
EU Office
Address: Avenue du Port 86C, box 204
Post Code: 1000
City: Brussels
Country: BELGIUM
Phone: [object Object]
Financial Data
New Organisation: false
Closed Year: [object Object]
Current Year: [object Object]
Membership Information
Members10 Percent: 2
Members25 Percent: 1
Members50 Percent: 0
Members75 Percent: 0
Members: 3
Members F T E: 0.44999998807907104
Structure
Structure Type: Structure
Organisation Members: Eurordis