ANNOUNCING THE LAUNCH OF CHILDREN’S TUMOR FOUNDATION EUROPE

Nov 7, 2018, Posted in Schwannomatosis, Awareness, Community, Collaborations, NF1, Press Release, NF2, Latest News

The Children’s Tumor Foundation (CTF) is proud to announce today the formation of the new European-based medical research NGO, called Children’s Tumor Foundation Europe. The United States based organization, with headquarters in New York City, was founded in 1978 and is the largest nongovernmental funder and catalyzer of neurofibromatosis (NF) research in the world, with its mission to drive research, expand knowledge, and advance care for the NF community. CTF Europe launches today as a partner organization to CTF in the United States.

NF affects 1 in 3,000 births and impacts all populations, genders, and ethnicities equally, meaning that NF affects about 125,000 Americans; 250,000 Europeans; or over 2.5 million people worldwide. NF is a rare genetic condition that causes tumors to grow on nerves throughout the body, and can lead to blindness, deafness, bone abnormalities, disfigurement, learning disabilities, disabling pain, and cancer.

Throughout its history, CTF has funded the best and most promising research globally, regardless of location, and as a result many European laboratories and clinicians have benefited from CTF support. This new organization will further strengthen bonds between experts and research opportunities worldwide, in line with CTF’s emphasis on open collaboration and open data.

Additionally, as a research catalyzer, CTF organizes the largest international NF meeting in the world. With this being the Foundation’s 40th anniversary year, CTF partnered with European NF groups to organize the 2018 Joint Global NF conference, which just concluded this week in Paris with over 850 experts in attendance, the largest gathering in NF history.

The Children’s Tumor Foundation is also an associated partner of the Innovative Medicines Initiative (IMI), as well as the NF package lead for the IMI Integrated Research Platforms call focused on the design of innovative clinical trials. This call’s focus on NF is serving as a test case for other rare diseases as well.    

While there is no cure yet for NF, Children’s Tumor Foundation research is making great progress, including encouraging clinical trial results for selumetinib, which recently received orphan drug status from both the European Medicines Agency and the U.S. Food and Drug Administration, and may possibly be the first ever approved drug for NF.

The focus of Children’s Tumor Foundation Europe will be to further build out relationships European agencies and partners, including EFPIA (European Federation of Pharmaceutical Industries and Associations), while maintaining its commitment to funding and driving innovative research worldwide that will result in effective treatments for NF.

The Foundation envisions a day when NF patients can live their lives free of the pain and difficulties that come with NF, and that day is on the horizon because of its innovative team-based approach, and its non-profit enabling platform aimed at accelerating R&D. CTF aims to advance cures not only for NF but expand the new R&D approach to other rare diseases as well.

The Children’s Tumor Foundation will host the inaugural launch event for Children’s Tumor Foundation Europe this evening at the Musical Instruments Museum in Brussels. Dr. Magda Chlebus, Executive Director, Science Policy and Regulatory Affairs, European Federation of Pharmaceutical Industries and Associations (EFPIA) is the keynote speaker. To learn more about Children’s Tumor Foundation Europe, please contact info@ctf.org.