Children's Tumor Foundation Europe

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