Neurofibromatosis (NF) Network is the national non-profit serving individuals affected by neurofibromatosis. Leading NF Advocacy, Building NF Community.
Wheaton, IL
Joined February 2011
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- Following141
- Followers3.5K
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Neurofibromatosis Network retweeted
Do you have questions about participating in #RareDisease clinical trials as a patient or caregiver? Join our webinar tomorrow at 2pm ET for answers.
RSVP now and submit your #ClinicalTrial questions: bit.ly/42U9OS6
Sponsored by @AlexionPharma
ALT Participating in Clinical Research: What Patients and Families Should Know. Webinar happening June 11, 2026 at 2pm ET. Featuring Julie Raskin from Congenital Hyperinsulinism International, patient advocate Katie Gillick, NORD's Tracey Sikora, and Dr. Paul Moots who is retired from Vanderbilt University Medical Center.
Neurofibromatosis Network retweeted
Big thanks to Drs. Armstrong and Hirbe for an engaging discussion at #ASPHO2026!
📺 Missed it? Watch the replay: bit.ly/NF26-T
Appreciation to @AlexionPharma, @AstraZeneca, and @SpringWorksTx for grant support, and @nfnetwork for collaboration. #CME #MedEd
Neurofibromatosis Network retweeted
Join the #Neurofibromatosis experts on 4/29 at 11:15 AM CDT during #ASPHO2026 for an NF1-PN #MedEd event. Produced with @nfnetwork ➡️ bit.ly/NF26-T #HemeOnc
Neurofibromatosis Network retweeted
If you see your name, congrats! To claim prize, email scullycoffee4nf @ gmail. com with prizes 1-10 ranked by preference. Link in bio for prizes. Thx for supporting @nfnetwork! #ScullyCoffee4NF #TheXFiles #GillianAnderson 14/?
Neurofibromatosis Network retweeted
#ScullyCoffee4NF is one week away! Support the @nfnetwork & you could add a very unique comic to your collection: 55 by #GaryYap, signed by Gary & @GillianA. Scroll up or visit the webpage in bio for details. You can donate anytime between now & Feb. 23. 5/?
ALT 55 comic signed by the creator Gary Yap and Gillian Anderson
Neurofibromatosis Network retweeted
Happy #ValentinesDay! May no bees ruin any romantic moments you try to have today 🚫🐝 One of the prize lots for #ScullyCoffee4NF includes a bee action figure signed by #DavidDuchovny. Took it to a concert, he chuckled when he saw it then asked “What is this?” #TheXFiles 4/?
ALT Variety of X-Files toys including a custom bee action figure signed by David Duchovny.
Neurofibromatosis Network retweeted
Allow me to reintroduce myself…
#ScullyCoffee4NF is a fan fundraiser for @nfnetwork that started back in 2017. I’ll add everything you need to know in this 🧵 over the next couple weeks leading up to 2/23. If you’re a fan of #TheXFiles and @GillianA, give us a follow! 1/?
ALT Collage of coffee cups, X-Files, and Gillian Anderson items from 2024 Scully Coffee 4NF
Neurofibromatosis Network retweeted
Join the upcoming webinar "Understanding NF2-SWN Today". On Friday, February 27th, at 10 am ET, leading experts Gareth Evans and Scott Plotkin will discuss the genetics, clinical features, treatments, and current clinical trials.
Click here to register: buff.ly/8LBHo7X
Neurofibromatosis Network retweeted
What a great #NF1 Family Symposium at @ChildrensLA! Thankful for the invitation to present on Transition to Adult Care & Adult/#AYA #NF1 Care by the CHLA NF Team - I learned a lot too. Grateful for our dedicated community; I definitely do not miss the traffic, though! #EndNF
Neurofibromatosis Network retweeted
3 months until the #ScullyCoffee4NF revival, I better start planning! If you’re new to #TheXFiles & @GillianA fandom, it’s a silly little fan fundraiser on Scully’s bday for @nfnetwork. It all started in 2016 with a barista yelling out “Scullaaay!” the way Mulder yells it.
ALT Screenshot a Facebook post from 2016 of a coffee cup with the name “Scully” on it and text over it that read “#ScullyCoffee4NF 2/23/17?”
Neurofibromatosis Network retweeted
If you haven't checked out #AboutFace on @TLC, tune in Wednesday nights at 10pm. The show features life saving surgeries for people affected by craniofacial abnormalities. This week, we showcase my patient Trey. Watch to see his amazing transformation! #NF
Trey's tumor is complicated to remove, but these surgeons are up for the challenge! It all start now on #AboutFace.
Neurofibromatosis Network retweeted
On August 30, we brought our mission to life at a @whitesox game with families impacted by Neurofibromatosis ⚾️
Thanks to @nfnetwork + @AlexionPharmaUS for making this Community Experience possible. Together, #WeTackleRare💙
Neurofibromatosis Network retweeted
We are T-Minus 12 Days away from this event. It’s a great event to help a great cause. All proceeds will go to the @nfnetwork. We will have a basket raffle and a 50/50 drawing. Please use the link to signup below. share.scoreholio.com/O8GNyCS…
Neurofibromatosis Network retweeted
Discover how service dogs can support individuals with NF2 in their daily lives. Leah Manth will share her personal experience and insights as both a patient and advocate.
Don't miss it, register now to secure your spot!: buff.ly/41m74Nw
Neurofibromatosis Network retweeted
Another infographic to start the knowledge this week.
Thats NF2, all those tumour types
#endNF2 #NF2awareness #neurofibromatosistype2
#NF2support #nf2 #nf2family #nf2warrior #LetstalkNF2 #NF2SWN
Neurofibromatosis Network retweeted
What can healthcare professionals be on the look out for and where can they go for more information - what’s the route to a diagnosis for NF1?
Join us on Jan 30th 2025, at 3.30pm GMT
Book your free place now: bit.ly/CTT-RARE-Revinar
Neurofibromatosis Network retweeted
Professor D. Gareth Evans offer a summary of the current research on the links between #NF1 and breast cancer. Read the full article and access further support here nervetumours.org.uk/news/bre…
Our helpline is on 07939 046 030 operating Mon, Wed, Fri 9am to 5pm.
Neurofibromatosis Network retweeted
So excited to collaborate with the one and only @debbiegibson on this special auction to benefit the @nfhopeconcert and @nfnetwork.
Proceeds will help the 130,000 living with Neurofibromatosis.
Win the ultimate VIP experience here: debbie4nf.givesmart.com
Neurofibromatosis Network retweeted
Women with #NF1 often experience a lack of knowledge about their increased risk of developing #BreastCancer and the NHS guidance to screen at 40.
To help inform GPs of the risks and current guidance, download our letter to hand to your GP. rarerevolutionmagazine.com/n…
@ChildhoodTT
Neurofibromatosis Network retweeted
Highlighting our amazing Presenting Sponsors,
@SpringWorksTx and @AlexionPharma, starting today with our conversation with SVP, Head of Global Medical Affairs at SpringWorks, Uche Iloeje. #nfhopeconcert #TheLIVEInterviews youtube.com/live/QZTcAaRPKfM…
