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a Facial Infiltrating Lipomatosis community

Facial Infiltrating Lipomatosis (FIL) is an ultra-rare overgrowth condition affecting half of the face.

WonderFIL Zebra forest
WonderFIL Zebra rocks
WonderFIL Zebra Balloon
WonderFIL Zebra balloon
WonderFIL Zebra balloon
WonderFIL smiles balloon
Baby with Facial Infiltrating Lipomatosis
Young girl with Facial Infiltrating Lipomatosis

WonderFIL smiles is a nonprofit organization, an international community for people with FIL and their families. We have an active online community and we would love to connect with you.

WonderFIL smiles community hope for Facial Infiltrating Lipomatosis
 
 
 

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The condition is caused by a somatic mutation in the PIK3CA gene. It is a condition on a spectrum called PROS,

PIK3CA Related Overgrowth Spectrum. On this website you will find a detailed description of FIL, the genetic cause

and get the latest news about research & treatment options.

March 2020
Download our free WonderFIL smiles Printable Activity Pages here.

March 2020
Novartis will start a retrospective chart review study of patients with PIK3CA-Related Overgrowth Spectrum who have received Alpelisib (/BYL719).

February 2020
Rare Disease Day took place on February 29th and WonderFIL smiles community raised our hands in solidarity. Check out the videoclip we made on our Facebook page.

February 2020
Our friends at CLOVES Syndrome Community (an organization for another PROS condition) receives important grant from the Chan Zuckerberg Initiative's Rare As One Project.

January 2020
Novartis' presentation at JP Morgan informed about the PIK3CA inhibitor Alpelisib (Piqray/BYL719) is in phase 2 for PROS indication! A clinical trial is rumored to start soon.

November 2019
Novartis was granted orphan drug designation by the FDA for its drug Alpelisib in the treatment of PIK3CA Related Overgrowth Spectrum (PROS) condition.

October 2019
ArQule announces first patient dosed in registrational MOSAIC trial of Miransertib for the Treatment of Proteus Syndrome and PIK3CA Related Overgrowth Spectrum.

August 2019
WonderFIL smiles member, Zachariah (6), was featured in a People article about "A doll like me".

June 2018
A study published in Nature about a cohort of 19 PROS patients who all(!) displayed improvement by drug treatment with the alpha specific PI3K inhibitor, Alpelisib.
Baby girl with Facial Infiltrating Lipomatosis
Baby boy with Facial Infiltrating Lipomatosis

This website is intended to connect families and people with the condition, share experiences, provide information and support. It is not intended for medical diagnostic use or to replace medical consultation. No images on this website may be used or reproduced.  

Copyright © 2020 WonderFIL smiles. All rights reserved. WonderFIL smiles is a registered non-profit organization.