NF Data Portal News
Updates, funding opportunities, and research spotlights from the NF Open Science Initiative.
by Sasha Scott, PhD, Sage Bionetworks The Children’s Tumor Foundation, in partnership with the Schwannomatosis Open Research Collaborative (SORC), granted three travel awards to deserving researchers so that they could a...
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Expanding Horizons: Three Awardees to Attend NF Conference with SORC Travel Grants
The Schwannomatosis Open Research Collaborative (SORC) is an innovative, community-based research project aimed at utilizing publicly available data to uncover new scientific insights into the rare and understudied genet...
Postdoctoral Position Available in the McClatchey Lab
The McClatchey lab is seeking postdoctoral research fellows who are enthusiastic, motivated, and like to think outside the box to join our NF2/schwannomatosis team. In collaboration with the Giovannini (UCLA) and Stott (...
Apply Now: Children's Tumor Foundation 2023 Young Investigator Award
Children's Tumor Foundation is now accepting Letters of Intent (LOI) for the 2023 Young Investigator Award (YIA) program. The deadline to submit an LOI is January 4, 2023 5:00pm ET. Children's Tumor Foundation has also a...
Hack4NF Winning Projects Announced
This press release was originally published on the Children's Tumor Foundation Blog on November 16, 2022. Hackathon Leveraged Genomic Datasets to Develop Drug Targets, Predict Variants and Correctly Classify Tumors for N...
Applications Open for Doris Duke 2023 Physician Scientist Fellowship
The Doris Duke Charitable Foundation is now accepting applications for the 2023 Physician Scientist Fellowship competition. Applications are due January 13, 2023, 3pm ET. Grants of $220,000 over two years ($100,000 direc...
NF1 Project Seeks Study Participants
A group of Australian researchers are doing a study to learn more about cutaneous neurofibromas (benign skin lumps) in adults with NF1. They aim to understand why some people are mildly affected and other people have man...
Big Shift in U.S. Policy Regarding Open Access of Scientific Research
The Biden Administration announced a new requirement, to be implemented as soon as the end of 2025, that the results of all scientific research be made available publicly as soon as that research is published. This chang...
Data sharing specifications for the NF community
This document describes data types and formats that should be shared by the Neurofibromatosis (NF) research community for the NF Data Portal.
2022 NF Conference Overview
The NF-OSI team from Sage Bionetworks presented three different open-science focused projects at the 2022 NF Conference in Philadelphia, PA between June 18-21. Didn’t attend the conference? Learn more about these present...
N-TAP Announces an RFA for Biology and Therapeutic Development for NF1 Associated Cutaneous Neurofibromas
The Neurofibromatosis Therapeutic Acceleration Program (NTAP) (www.n-tap.org) is a philanthropic research entity based at Johns Hopkins University School of Medicine dedicated to the discovery of therapeutics for the per...
Researcher Spotlight: Astrid Behnert, M.D.
What is your name, title and institutional affiliation? Astrid Behnert Department of Pediatrics, Benioff Children’s Hospital University of California, San Francisco What is your role, ie what do you do? I’m a clinician-s...
Researcher Spotlight: R. Taylor Sundby, MD
What is your name, title and institutional affiliation? R. Taylor Sundby, MD Advanced Clinical Fellow Pediatric Oncology Branch, National Cancer Institute, National Institutes of Health What is your role, ie what do you...
Researcher Spotlight: Sara Gosline, Ph.D.
Sara Gosline. (Photography by Scott Eklund/Red Box Pictures) What is your name, title and institutional affiliation? Sara Gosline, Ph.D. Computational Biologist, Pacific Northwest National Laboratory What is your role, i...
Researcher Spotlight: Gelareh Zadeh, M.D., Ph.D.
Dr. Gelareh Zadeh, a neuroscientist at UHN and UofT, has been appointed the first female chair of neurosurgery in Canada. Photographed in her home on August 12, 2020. Kate Dockeray/Globe and Mail What is your name, title...
Upcoming Talks on NF
Wondering what's new in NF research? The NF research community is sharing their knowledge with the world. Check out the following events. INFER: Masterclasses in NF from Children's Tumor Foundation Europe October 6th - D...
Researcher Spotlight: David A. Largaespada, Ph.D.
What is your name, title and institutional affiliation? David A. Largaespada, Ph.D., Professor, Masonic Cancer Center, University of Minnesota What is your role, i.e., what do you do? I am the Associate Director for Basi...
Four New NF-OSI Posters and Presentations from the 2021 NF Conference
At the 2021 Virtual NF Conference, hosted by the Children's Tumor Foundation, three members of the NF-OSI from Sage Bionetworks presented posters. Senior Scientist Robert Allaway presented a poster reflecting on the new...
Researcher Spotlight: Dr. Angela Hirbe
What is your name, title and institutional affiliation? Angela Hirbe, M.D., Ph.D. Assistant Professor of Medicine and Pediatrics Director, Adult Neurofibromatosis Clinical Program Division of Oncology, Sarcoma Section Wa...
New Docs Site for the NF Data Portal now LIVE!
We want the NF Data Portal to be as open and easy to use as possible. To that end, we just launched a new docs site full of documentation to help you learn how to find, share, and use data on the NF Data Portal. Some hig...
NF Annotation App available in beta!
We’re thrilled to announce that the NF Annotation App - NF Data Curator - is now available in beta. NF-OSI aims to increase collaboration, fuel important discoveries, make rare disease data more accessible to the communi...
Apply for the Gene Therapy Initiative Team Science Award Program
The Gilbert Family Foundation’s (GFF) Gene Therapy Initiative is accepting proposals for high-impact research on gene therapy strategies aimed at addressing the loss of neurofibromin 1 (NF1) gene function in neurofibroma...
Apply for the Drug Discovery Initiative Registered Reports Award Program
Applications are now open for the Children's Tumor Foundation's (CTF) 2021 cycle of Drug Discovery Initiative Registered Reports (DDIRR) award program, a program to fund early stage testing of candidate drug therapies fo...
Hack for NF 2020
Do you want to advance the field of neurofibromatosis (NF) and rare diseases? Hack for NF, and be part of developing solutions to end rare diseases! Hackers present rare disease solutions at the 2019 NF Hackathon in San...
Apply to the Francis S. Collins Scholars Program
In 1990, Dr. Francis S. Collins led the team that discovered the NF1 gene. Now it's your turn to join the team that discovers the cure. The Francis S. Collins Scholars Program in Neurofibromatosis Clinical & Translationa...
Summer 2020 Updates
NF Data Portal: major updates We’re thrilled to announce the re-release of the NF Data Portal. New features include the ability to explore studies, data, and more with interactive plots; the ability to share your search...
Spring 2020 Update
Photo courtesy of National Cancer Institute. Therapeutic highlight: MEK inhibitor approved! After several years of innovative preclinical research and intensive clinical study, selumetinib was granted FDA approval for us...
Uncovering Therapeutic Strategies for Neurofibromatosis Type 1
By Jineta Banerjee and Robert Allaway Drug discovery studies are challenging to conduct for rare diseases because there often isn’t enough relevant biological data. Small, or underpowered, datasets hinder the effectivene...
Winter 2019 Updates
2nd NF Hackathon results The NF-OSI ran the 2nd ever NF Hackathon in San Francisco this past September. During this collaborative scientific event, participants explored genomic, drug screening, imaging, and other data f...
Fall 2019 Updates
2nd NF Hackathon: Sept. 13-15 in San Francisco Reminder: A collaborative research event is happening in San Francisco on September 13-15, 2019, one week prior to the 2019 NF Conference. Following in the footsteps of the...
Summer 2019 Updates
New datasets available on the NF Data Portal The Synodos for NF2 project, led by Drs. Wade Clapp, James Gusella, Scott Plotkin, and Jaishri Blakeley, recently had its final data release. There are several new publicly av...
Nerve Fibers in Skin Involved in Initiating Neurofibromas in NF1
Contact Information: Frank L. Rice, PhD President, CEO and Chief Scientist Integrated Tissue Dynamics, LLC 7 University Place, Suite B236 Rensselaer, NY 12144 frankrice@intidyn.com www.INTiDYN.com \[Partner Press Release...
Spring 2019 Updates
The NF Open Science Initiative has had a busy start to 2019. A few updates: New NF1 and NF2-related datasets now available on the NF Data Portal This quarter marks the release of several new datasets that are now availab...
New Research Tools Available in the Search for Therapies for NF1
Read the full article in Scientific Data (June 12, 2018). A collaboration of the Neurofibromatosis Therapy Acceleration Program (NTAP), together with Sage Bionetworks, Johns Hopkins, NCATS and the University of Florida P...