The clinical study we have been waiting for, the study of the use of the PIK3CA inhibitor Alpelisib from Novartis in PROS patients. Info has just been released and the estimated study start is February the 2nd 2021. For all the details please visit clinicaltrials.gov
WonderFIL smiles very first Newsletter is out and arrived in our subscribers inboxes this week.
A FILamily patient story, interview with an expert, new shirts and more.. Read it here.
New Open Access article about FIL. «Facial infiltrating lipomatosis (FIL) is a rare and underreported clinical entity. ... Clinical management varies from conservative liposuction at an early age to aggressive subtotal resection in adulthood.»
An exciting new article is out! 🔬
«As there is currently no curative treatment for PIK3CA-related overgrowth spectrum, our results identify HSF1 as a new potential therapeutic target.»
The FDA approved PIK3CA inhibitor Alpelisib has been recommended to receive marketing authorisation for breast cancer indication from the EMA (European Medicines Agency). Expected authorisation within the summer.
A printable brochure about FIL for children has been created and can be downloaded here. Please contact us if you would like the brochure in a different language.
Advances made in precision medicine offer new hope to those affected by FIL and PROS conditions. We wish to make a difference and support this important research! 100% of proceeds will go towards research.
Raise awareness and also support our t-shirt fundraiser for more research into Facial Infiltrating Lipomatosis. Visit our store at Bonfire.com
About WonderFIL smiles
A global community for those affected by Facial Infiltrating Lipomatosis
Our FIL community started in 2017 as a group on Facebook. We lovingly named our group WonderFIL smiles inspired by the popular book Wonder and the unique smiles of those affected by FIL.
As of January 2020 WonderFIL smiles is a registered non-profit organization, headquartered in Norway and run on a voluntary basis.
We aim to support people with FIL & their families, and to empower them with information, knowledge and connectivity.
Linda Roeksund with her daughter
Founder & Chairwoman
"My hope is for WonderFIL smiles to be what I wished had existed when my baby got her FIL diagnosis. Where those affected can get the information they seek and need and most importantly, to connect with other FIL patients and families, people who can genuinely say; I understand."