The Children's Tumor Foundation's mission is to drive research, expand knowledge, and advance care for the NF community.
Since its formation, the Children’s Tumor Foundation has been crucial to the development of solid scientific data about the genetic disorder neurofibromatosis (NF). Thanks to the generosity of our donors and supporters, we are breaking through barriers and forging the pathway that will lead to a cure.
The Children’s Tumor Foundation is an Associated Partner of the European-based Innovative Medicines Initiative
The Innovative Medicines Initiative (IMI), a jointly funded partnership between the European Union (EU) and the European Federation of Pharmaceutical Industries and Associations (EFPIA), will soon issue a call for an integrated research platform enabling patient-centric drug development.
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We’re proud to announce that our latest annual report, Leading the Way, is now available to read online. This report of the Foundation’s activities during the 2017 fiscal year highlight progress in research, awareness, patient support, and the accomplishments of a vibrant NF community in the fight to end NF. The financial pages offer transparency regarding CTF’s expenditures, which have earned the Foundation a four-star rating from Charity Navigator once again. And of course, none of this would be possible without the support of all of you – the thousands of donors who give to ensure that NF research and programs continue.
More >Synodos for NF1 Research Published in Leading Journal
Children’s Tumor Foundation research led by its Synodos for NF1 team has demonstrated the ability to replicate NF1 manifestations in pigs, as reported in JCI (Journal of Clinical Investigation), a leading peer-reviewed publication of the American Society for Clinical Investigation. These manifestations include café-au-lait spots, neurofibromas, axillary freckling, and learning and memory neurological deficiencies. The significance of this advancement is that it allows researchers and clinicians, for the first time, to test and study potential NF treatments in large animal models that mimic human manifestations of neurofibromatosis.
More >Care of Adults with NF1, a new resource, has been published by the American College of Medical Genetics and Genomics (ACMG). It offers voluntary guidelines for medical management based on published reports and the expertise of the authors, who are leaders in NF1 medical care.
We are sharing this news with you as a resource to manage your own care. You can get this article free of charge at Springer Nature: https://rdcu.be/MFHJ
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