Welcome to the NF 50/50 Challenge, a social media challenge
to help defeat Neurofibromatosis. We’re glad to have you on board!

What is NF?

NF (Neurofibromatosis) is a genetic mutation that can cause over 100 potential symptoms. 2.5 million people are affected around the world. Patients can go blind, deaf, develop chronic pain or life threatening tumors on nerves anywhere in the body, amongst a large variety of other debilitating symptoms. Until now, there is no cure for this disease.

Those affected are often left in the dark: Limited access to proper care, lack of information or clinical trials, little awareness in the general public and among health care professionals. People with NF live with constant worry about their health, trying to cope with this highly unpredictable disease.

Why the NF 50/50 Challenge?

We want to use the power of social media for a good cause, to help those suffering from NF and have some fun at the same time! Every single person joining the #nf5050challenge will help raise awareness around NF amongst the general public. We will use this momentum to push for the much needed research on this disease, and to raise donations towards it. Together, we want to make a difference for people with NF – until they can finally get answers to the many questions they have.

Join us – Let’s have some fun and raise awareness for the people with Neurofibromatosis!

How do I join?

You can join the challenge from wherever you are. You only need water, salt and your phone!


Post your challenge clip on Facebook, Instagram, TikTok or all three – the more, the better. Always use the hashtag #nf5050challenge and tag us!

Take a look at our #nf5050challenge champions:

Support people with Neurofibromatosis by donating

Via bank transfer:
NF Patients United
IBAN AT13 2011 1839 6900 1500

Or choose a different payment method here

If you like, tag your local NFPU member organisation on social media:

NF Kinder
@nfkinder on Instagram
nfkinder on Facebook

Croatian Neurofibromatosis Association
nfhrvatska on Facebook

Dansk forening for NF Recklinghausen
@nf_danmark on Instagram

NF Ireland
@nfireland on Instagram
NFAIreland on Facebook

Ananas onlus
@ananas_neurofibromatosi on Instagram
ananas.neurofibromatosi on Facebook

 ANF onlus
ANFneurofibromatosi on Facebook

Panhellenica Association of Patients and Friends with NF
@nfgreece_ on Instagram
zwhmenf on Facebook

APNF – Associação Portuguesa de Neurofibromatose
@apnf.pt on Instagram
APNFpt on Facebook

@neurofibromatosis.es on Instagram
Asociación-de-Afectados-de-Neurofibromatosis-112237167003283  on facebook

@acnefi on Instagram
acnefi on Facebook

SNFV Neurofibromatose Schweiz on Facebook

The Netherlands
Neurofibromatosis Vereniging Nederland
NFVN-Neurofibromatose-Vereniging-Nederland on Facebook

Türkiye Neurofibromatozis Derneği
@neurofibromatosisdernegi on Instagram
@NfDernegi2006 on Twitter
groups/1466216013613863 on Facebook

Childhood Tumor Trust
@childhoodtumourtrust on Instagram
@ChildhoodTT on Twitter
childhoodtumourtrust.org.uk on Facebook


NFPU stands for NF Patients United, and is Europe’s umbrella organization around Neurofibromatosis. By combining the efforts of all organizations, we try to find answers on Neurofibromatosis. Find out more here

© 2022 NF Patients United