Neurofibromatosis Tumor Foundation http://nftumorfoundation.org/
Mid-Atlantic (443) 423-0535, 1543 Dellsway Road, Towson, MD 21286 john.dobson@nftumorfoundation.org
U.S. National Library of Medicine, Genetics Home Reference https://ghr.nlm.nih.gov/condition/neurofibromatosis-type-1
Neurofibromatosis Network https://www.nfnetwork.org/
Facebook: https://www.facebook.com/Neurofibromatosis-Network-9766902412/?ref=ts
YouTube: https://www.youtube.com/user/nfincvideo
Webinars for Families/Caregivers https://www.nfnetwork.org/index.php?id=webinars
Inspire Support Community https://www.inspire.com/groups/neurofibromatosis-network/?ga=freshen
Children's Tumor Foundation (NF1) https://www.ctf.org/understanding-nf/nf1
Johns Hopkins Comprehensive Neurofibromatosis Center https://www.hopkinsmedicine.org/neurology_neurosurgery/centers_clinics/neurofibromatosis/nf1/
Maryland Patients - For assistance with making an appointment, please contact the Johns Hopkins Comprehensive Neurofibromatosis Center at 410-502-6732
Find a Doctor https://www.hopkinsmedicine.org/neurology_neurosurgery/centers_clinics/neurofibromatosis/experts/index.html
Kids Health https://kidshealth.org/en/parents/nf.html
RASopathies Net https://rasopathiesnet.org/ RASopathies are a group of genetic syndromes that may be as common as 1:1000. The RASopathy syndromes include: cardio-facio-cutaneous (CFC), Costello (CS), LEOPARD/NSML, Neurofibromatosis type 1 (NF1), and Noonan (NS).
Facebook: https://www.facebook.com/rasopathiesnetwork
Instagram: https://www.instagram.com/rasopathiesnet
Twitter: https://twitter.com/RASopathiesnet
RASopathy Clinicians
https://rasopathiesnet.org/rasopathies/rasopathies-clinics/
Our mission is to advance research of the RASopathies by bringing together families, clinicians and scientists. RASopathiesNet is the product of RASopathies Network USA, a 501c3 Non-Profit, and the RASopathies Network UK. Our goal is to grow a community of practice around RASopathies research. This includes:
- Convening biennial symposia to bring families, clinicians and researchers together
- Developing a discussion forum for professionals to foster collaborative research efforts
- Developing and maintaining family-friendly informational resources, including a bibliography for lay and professional audiences.
- Researching the development and implementation of a family/patient-driven disease registry
2021 Conference - 7th International RASopathies Symposium - Contact: info@rasopathiesnet.org
Chairs: Maria Kontaridis, PhD, Masonic Medical Research Institute, Utica, NY
Amy Roberts, MD, Boston Children’s Hospital, MA
July 23-25, 2021 Marriott Tech Center, Denver, Colorado
Peer-reviewed Journal Publications and Conference Reports
Advancing RAS/RASopathy therapies: An NCI-sponsored intramural and extramural collaboration for the study of RASopathies, published Jan 2020, Gross AM et al.; Am J Med Genet Part A
https://onlinelibrary.wiley.com/doi/abs/10.1002/ajmg.a.61485
The sixth international RASopathies symposium: Precision medicine-From promise to practice, published Dec 2019, Gripp KW et al.; Am J Med Genet Part A
https://onlinelibrary.wiley.com/doi/abs/10.1002/ajmg.a.61434