Sophia Carias doing an amazing job at presenting her flash talk of our work developing a new patient reported outcome measure of quality of life to use in NF2-related schwannomatosis clinical trials - if you are at #NFCon24, stop by her poster to learn more! #endNF

Meeting attendees might be tired of hearing every speaker gush about how amazing and special the NF community is, but it's true! Happy to share my journey to becoming an independent investigator and facilitate young investigators' careers in NF any way I can. #endNF #NFCon24

Peep me in my talk show era, representing team #PROs (patient reported outcomes) for measuring treatment outcomes for cutaneous neurofibromas.

Recruiting Spanish-speaking NF1 patients! Te interesaría participar en un estudio de investigación para mejorar la atención que reciben las personas que viven con NF1 de parte de sus medicos. Completa una breve encuesta aquí: redcap.link/nfstudy

Over the next two weeks the articles from our patient led issue will be published online. Stay tuned as we will post all of the relevant pieces and links here #BMJPatientLedIssue

That's a wrap🎬! We've been shooting educational videos about #neurofibromatosis care for our new study. Thank you Justin T. Jordan, MD, MPH, FAAN, Scott Plotkin, our wonderful NF patient actors, and the whole Family Center for Neurofibromatosis and Schwannomatosis team for making this happen.

🚨🚨The 4th Annual #NFYIF Call for Abstracts is officially OPEN! Are you a Jr Faculty, Fellow, Post Doc, or PhD student conducting active research in #NF? Submit your work for a chance to go to Baltimore in Dec! Deadline Sept 9: ce.ceconcepts.com/NFYIFsubmit Children's Tumor Fdn #NFYIF24

An amazing repository of research methods papers tagged on #MethodologyMonday - thank you Marion Campbell for writing about research methods in such an accessible, helpful way!

#PxP24 is only a couple of weeks away! A conference led and designed by #Patients for #PatientPartners in #Research. The full agenda is here pxphub.org/event/program/ and you can register here bit.ly/PxPConference-… (it's free & virtual). Each day has its own theme... /1

Just posted an updated preprint of our paper on community-engaged measure development. It provides an overview of existing community-engaged measure development work in psychological science and a roadmap for supporting this type of work in the future! osf.io/preprints/psya…

Our latest feature in Global Heroes highlights our “Women in NF” essay series. These reflections feature 19 trailblazing women in science who have made significant contributions to NF research or clinical care. 🙌 Read more here: go.ctf.org/3ZmlwEG #endnf #makenfvisible

1/2 Last year Louise Ting, a public contributor with lived experience, created this brilliant diagram outlining how patient and public involvement (#PPI) can be integrated into every step of the research life cycle ⬇️

When publicly sharing data, there are 3 levels of documentation that should be deposited as well: Project-level (e.g. project-summary document), data-level (e.g., README explaining your datasets), and variable-level (e.g., data dictionary). Find templates for each below. 👇

REiNS is conducting an online research study to learn more about the perspectives of patients and guardians regarding future gene therapy. Learn how to participate. tinyurl.com/3f7n5ux4 #reins #neurofibromatosis #NFnetwork #NF #researchstudy

🚨 Youth with NF1 Needed for Study! 🚨 Help us make a difference! 🧠💡 Answer a few quick screening questions here: redcap.link/SMART-NF1. Thomas Kukla-Colby @Nfnetwork End NF Tricia Lucas #NF1 #Cognition #MentalHealth #Neurofibromatosis

#NFYIF alumni Vanessa L. Merker, PhD of MGH Neurology presents Development and Initial Feasibility Testing of an Online Platform to Promote Evidence-Based Care for Underserved Patients with Neurofibromatosis 1 (#NF1).   #makenfvisible #endnf #MedEd #MedTwitter #MedX #NFYIF24

Research Opportunity for NF1 Patients & Parents! Help improve healthcare for NF1. Massachusetts General Hospital is testing two interventions to provide NF1-specific recommendations during your annual physical exam or well-child visit. redcap.link/mynfguide