NF Registry News

NF Registry Now Available in Five Languages

English, Spanish, French, Italian & Portuguese

The Children’s Tumor Foundation is proud to share that the NF Registry is now available in five languages: English, Spanish, French, Italian, and Portuguese. This enhancement will grow and diversify the Registry population, making it a bigger and more powerful tool in the fight against all types of neurofibromatosis and schwannomatosis.

NF patients are showing the world that the NF community is united in its desire to drive the search for better treatments and care. By making themselves available and sharing de-identified data about their experiences over time, patients have become an active part of NF research, and proven to be interested in clinical trials.

Thank you to our partners Linfa NEUROFIBROMATOSI (LINFA), Associação Portuguesa de Neurofibromatose (APNF), and Groupe d’Entraide Romand pour les Neurofibromatoses (GER-NF) for working with us to expand the reach of the NF Registry.

With more than 10,000 participants, the Registry has already made a tremendous impact on NF research: it has alerted participants to over 50 clinical trials, sped up study recruitments for faster results, focused research to match patient priorities, and attracted pharmaceutical companies to the NF field.

Visit nfregistry.org to join or update your record. To change the language, look for the flag in the upper right corner.