We are proud to share that the NF Registry is now available in 5 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 NF in all its forms.
Visit nfregistry.org to join or update your record. To change the language, look for the flag in the upper right corner.
By making themselves available and sharing de-identified data about their experiences over time, patients are showing the world that our NF community is united in its desire to take part in driving the search for better treatments and care — that they want to learn about participating in clinical trials and to offer insights into their own views and preferences. 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 over 10,000 participants, the Registry has already made 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.
