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.
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!
You can join the challenge from wherever you are. You only need water, salt and your phone!
@nfkinder on Instagram
nfkinder on Facebook
Croatian Neurofibromatosis Association
nfhrvatska on Facebook
Dansk forening for NF Recklinghausen
@nf_danmark on Instagram
@nfireland on Instagram
NFAIreland on Facebook
@ananas_neurofibromatosi on Instagram
ananas.neurofibromatosi on Facebook
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
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.