Neurofibromatosis Patients United (NFPU) is the European Neurofibromatosis umbrella patient association
Europe and beyond
Joined March 2021
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NF Patients United retweeted
Thrilled to see everyone enjoy the NF Ambassador Academy in Rotterdam 🎉
Each participant received a diploma for their involvement. Thanks to NF Patients United and Alexion Pharmaceuticals who made it possible. We are excited for next year already🌟@NfPatients @AlexionPharma
NF Patients United retweeted
Update from NF Academy 2024 in Rotterdam
Our NF participants are having an amazing time exploring the beautiful city and diving deep into the program. Proud of their engagement and the valuable experiences they’re gaining.
@NfPatients @ChildhoodTT
NF Patients United retweeted
NF Academy 2024 in Rotterdam
Three amazing Irish girls are taking part in an empowering program on NF1, NF2, Schwannomatosis, and patient advocacy. Let’s cheer them on as they learn, connect, and grow.
Thank you to @NfPatients for organizing.
NF Patients United retweeted
📣 Tell us how your rare disease impacts your daily life in the new #RareBarometer survey!
Available here in 25 languages: tiny.cc/RB_DailyLife
ALT Background with solid purple and light pink dotes. The middle frame contains texts that reads: "New Rare Barometer survey. The impact of rare diseases on everyday life." as well as the Rare Barometer logo.
NF Patients United retweeted
The future is accessibility! 🌍
Join us on 18 Sept at 2 PM (CEST) for our webinar with Adéla Odrihocká, André Felix, and James Buller, exploring how to improve accessibility in the rare disease community.
Register now🔗 shorturl.at/rRNnt
ALT A slide with text that reads "Enhancing digital and physical accessibility"
NF Patients United retweeted
Cutaneous neurofibromas are the most common type of tumor in people with neurofibromatosis type 1 (NF1). A team of researcher at the Johns Hopkins Medicine invite you to participate in an important research project. Read more... tinyurl.com/4m2a7a8m
#neurofibroma
It's almost time: the global NF Conference is happening again this year, bringing together the global scientific community from around the world. Come and visit us and our 15 patient organisations at our booth and at the talks & discussions there!
More info on our website!
A big thank you to everyone who took part by sharing videos and following our campaign to learn more about NF. Join us and keep spreading the word about #neurofibromatosis
#StrongerTogether
💚💙 #nfambassadors 🙏🏻
NF Patients United retweeted
We want to thank the RARE Revolution for letting us have this #TakeoverTuesday and make more people aware of #Neurofibromatosis. We hope we were able to spread the word and make people with NF feel heard and seen!
If you liked our posts, subscribe: nf-patients.eu/next-edition-…
NF Patients United retweeted
The NF Academy is a program to educate young people to become #ambassadors for NF. The 2024 NF academy will take place in Rotterdam with our Dutch member organisation.
Watch the video about last academy: youtube.com/watch?v=lhR2LK16…
More info: nf-patients.eu/nf-academy-20…
@NfPatients
NF Patients United retweeted
Since May is the official NF awareness month, we want to bring even more attention to NF. And we want to show what it means to live with this rare disease. As a non-profit org @NfPatients relies on regular donations. Support our work with your donation nf-patients.eu/support
NF Patients United retweeted
"#Neurofibromatosis is a genetic disease. So, if one parent has a type of NF, there is a 50 percent chance that he or she will pass it on to the child. And - NF really looks different on anybody. Did you know that already?
#RareDisease #Genetics #challenge "
@NfPatients
NF Patients United retweeted
"Have you ever heard or read about the rare genetic disease #Neurofibromatosis? Do you know anyone who lives with it, maybe a friend or a relative or are you affected yourself? Tell us in the comments below!
#raredisease #nf #symptoms #nfpu #nfpatientsunited" @NfPatients
NF Patients United retweeted
"The rare disease #Neurofibromatosis affects the everyday life of patients and most of them share certain experiences that other people don’t. In the actual #ofcourse challenge, our ambassador speak about the shared experiences of NF patients. Follow us on @NfPatients
NF Patients United retweeted
"The rare disease #Neurofibromatosis affects the everyday life of patients and most of them share certain experiences that other people don’t. In the actual #ofcourse challenge, our ambassador speak about the shared experiences of NF patients. Follow us on @NfPatients
Thanks for sending out info on the NF Academy by @RareRevolutionMagazine - the ambassador training from @NfPatients taking place in Rottedam this summer!
The NF Academy is a program to educate young people to become #ambassadors for NF. The 2024 NF academy will take place in Rotterdam with our Dutch member organisation.
Watch the video about last academy: youtube.com/watch?v=lhR2LK16…
More info: nf-patients.eu/nf-academy-20…
@NfPatients
Apply now! There are only few places left at the NF Academy 2024 in #Rotterdam.
The NF Academy is an NF ambassador training for patients or relatives of patients with NF1, NF2-SWN or SWN. Participants should be between 19 and 35 years old.
More info: nf-patients.eu/nf-academy-20…
NF Patients United retweeted
Today is World NF2 Awareness Day!
We celebrate World NF2 Awareness Day on May 22nd each year in reference to chromosome 22, which is the location of the gene change for those with neurofibromatosis type 2-related schwannomatosis (referred to as NF2 or NF2-SWN).
#nf2
Even though Neurofibromatosis is not visible, it can cause life-threatening symptoms such as nerve #tumours or benign #cancers. 💚💙 In this video Catherine, from @NfIreland emphasizes the importance for patients to educate themselves about the #disease & #symptoms
#prevention
NF Patients United retweeted
IT'S OUT! 😮 Through a new study, we have identified seven red flags, or clinical clues, that point to a patient having an underlying #rarecondition! 🚩 Read the full report now. Thanks again to everyone who took part in the survey!
ojrd.biomedcentral.com/artic…
