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WonderFIL smiles

a Facial Infiltrating Lipomatosis community

Recently diagnosed with FIL?


We want you to know that you are not alone. Please read our letter to those who are newly diagnosed.

Facial Infiltrating Lipomatosis Community WonderFIL smiles News section
July 2020
Novartis receives approval from The European Commission (EC) for the PIK3CA inhibitor Piqray® (alpelisib) for breast cancer indication. Read the media release here.

July 2020
New article out on PROS. "PIK3CA vascular overgrowth syndromes: an update"

June 2020
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.»

May 2020
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.
May 2020

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.

May 2020
The pharmaceutical company Novartis has created an informational website about PROS geared towards physicians.

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 treatement with the PIK3CA inhibitor Alpelisib

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.

Facial Infiltrating Lipomatosis - FIL

The main characteristics of Facial Infiltrating Lipomatosis - FIL

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Facial-Infiltrating-Lipomatosis-Boy
Facial-Infiltrating-Lipomatosis-BabyGirl
Facial-Infiltrating-Lipomatosis-Girl
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Facial Infiltrating Lipomatosis community WonderFIL smiles FILamily

A noninheritable, ultra-rare craniofacial overgrowth syndrome affecting one half

of the face. Also often referred to as Congenital Infiltrating Lipomatosis of the Face (CIL-F). Typically noticable at birth by the asymmetrical cheeks. The condition is caused by a spontanious mutation in the PIK3CA gene. A diagnosis on a spectrum of diseases called PROS, PIK3CA Related Overgrowth Spectrum.


WonderFIL smiles is a community for those affected by FIL (/CIL-F). We are here to support you. On this website you will find a detailed description of Facial Infiltrating Lipomatosis, the genetic cause and get updated news about research & treatment options. 


WonderFIL smiles is a registered nonprofit organization and is an international community for people with FIL and their families. We're actively working on improving the lives of those with FIL. We have an active online community and we would love to connect with you.

  • Facial asymmetry with one cheek bigger than the other. The fat in the cheek is ill defined and infiltrates surrounding tissues, muscles and nerves.
  • Enlargement of the facial skeleton espicially the cheek bone and jaw on the affected side.
  • Early eruption of oversized teeth on affected side. 


Get a full overview of Facial Infiltrating Lipomatosis (FIL) here.

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WonderFIL smiles community hope for Facial Infiltrating Lipomatosis

This website is intended to connect families and people with Facial Infiltrating Lipomatosis (FIL), 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.