NF1 Project @Nf1Project
An international research project aimed at improving understanding of how genetics affects the number of skin neurofibromas a person with NF1 may develop. nf1project.com Australia Joined July 2022-
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We are still recruiting for this important genetic study. If you are an adult with NF1 you can participate from home by visiting the website nf1project.com. #nf1project #endnf #conquernf
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Associate Professor Tracy Dudding-Byth explains why studying the DNA of people with NF1 may lead to better understanding of tumour growth and new treatments in the future. fb.watch/j_VPLejpLs/ via @FacebookWatch
See this Instagram post by @janu_nfwarrior instagram.com/p/CqFtpA6LiQW/…
NF1 Project retweeted
"I've been running from my genetic condition my entire life. But TikTok caught up to me – and made me famous for the thing I disliked most about myself," writes Lilly Simon. usatoday.com/story/opinion/…
Thank you to all who have joined this important research study for adults with NF1. We now have over 400 people registered but we are still recruiting. Visit the website to learn more and participate from home. #Endnf #Conquernf #nf1project
The NF1 Project supports Rare Diseases Day. Many people in our community face daily physical and emotional challenges living with NF1. We hope medical research will play a part in easing this burden. #rarediseasesday #nf1project #endnf #conquernf
If you are an adult with NF1 we need your help to find the answers. Visit the website nf1project.com and participate from home. #EndNF #ConquerNF #NF1 #NF1project
This is an international study recruiting adults with NF1 to learn more about why neurofibromas develop and how to treat them. Scan the QR code to register and complete online. #EndNF #ConquerNF #NF1 #NFResearch
NF1 Project retweeted
#SleepDeprivation is commonly linked to #Neurofibromatosis. #Meditation for sleep is a specific, guided experience to help you get the natural sleep you need, letting go of the day and resting your mind and body. Find out more - bit.ly/3JLoQip
NF1 Project retweeted
At NF Aware Nigeria, we see a future where neurofibromatosis is understood, accepted, and treated with compassion and respect in Nigeria. Here is how you can be part of that future. The change we need starts with us in our own little way. #neurofibromatosis
If you are an adult with NF1 please consider being a participant in this study. The more we can understand NF1 the better chance we have to improve treatment options. Visit nf1project.com. #EndNF #NFResearch #ConquerNF # NF1
NF1 Project retweeted
#Neurofibromatosis can often cause painful symptoms. We’ve worked with our Specialist NF Advisors to create a #PainManagement section on our website, featuring useful pain-relieving advice. Find out more - bit.ly/3scR8bg #WeAreHereForYou #NFSupport
NF1 Project retweeted
Research: understanding your experience of NF1. @OPENHealth are looking for young people with NF1 aged 7-16, and caregivers of children with NF1 aged 4-16, to learn about your reality of living with #NF1. Find out more & take part: bit.ly/3VkoMLh #NFResearch
To be a part of this international study register at nf1project.com. #EndNF # ConquerNF #NF1 # Nf1Project # NFResearch
NF1 Project retweeted
Robyn L. learned about her neurofibromatosis type 1 (NF1) diagnosis at a young age, but it hasn't stopped her from pursuing a career in sports broadcasting, and "leading a life so determined and focused." ctf.org/news/stories-o… #endnf #nf1 #makenfvisible #nfhero #nfawareness
NF1 Project retweeted
Good news to see that hundreds have already completed this survey for those living with #Neurofibromatosis Type1. Be great to get to 1000.💚💙 #nf1 #endnf #benignisnotfine #
Help create a better future for people with NF1. Join our research project by scanning the QR code and registering on our website. #NF1PROJECT #ENDNF #NFAWARENESS #NFRESEARCH
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