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Main features of Facial Infiltrating Lipomatosis

What is FIL?


Facial Infiltrating Lipomatosis, or FIL, also called Congenital Infiltrating Lipomatosis of the Face, is a ultra-rare, noninherited overgrowth condition that is present at birth. Affecting one side of the face, ranging from mild to severe. Caused by activating mutations in the PIK3CA gene.

 

A diagnosis that is either isolated or associated with other conditions on the PIK3CA-Related Overgrowth Spectrum, or PROS.

WonderFIL smiles Facebook group
WonderFIL smiles letter to newly diagnosed

We have an active private Facebook group. A group solely for individuals with Facial Infiltrating Lipomatosis and their parents/partners. 

We want you to know that you are not alone. Read our letter to those who have recently been diagnosed with Facial Infiltrating Lipomatosis.

Informational brochures for kids. One about Facial Infiltrating Lipomatosis (FIL) and one about PIK3CA Related Overgrowth Spectrum (PROS). You can find them both here. Italian versions are available. Please don't hesitate to reach out if you'd like one in a different language. 

BLOGS

Read blogs by individuals affected by Facial Infiltrating Lipomatosis. 

AllStripes PROS Program
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Share your FIL journey and advance research. Join other PROS patients and families on AllStripes.com/PROS to contribute to multiple research efforts. 

T-SHIRTS

Raise awareness and support research by purchasing shirts from our store at Bonfire.com.100% of proceeds will benefit research into FIL and PROS.

DONATE

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 benefit research into FIL and PROS.

As a nonprofit organization we are also eligable to receive donations through Facebook fundraisers.



Make a secure donation by using the PayPal button below

AllStripes Logo

Because PROS (PIK3CA-related overgrowth spectrum) is rare, researchers need more information directly from patients and their families to understand the condition.


Your progression, symptoms and health challenges are all

important clues to help researchers develop new treatments.

AllStripes PROS program

Join other PROS patients and families on AllStripes to contribute to multiple research efforts:


Go to allstripes.com/pros


Create your account. Our team collects and

de-identifies your medical records

- no appointments, no cost.


Success — you’re a hero for PROS!


How you can help

Facial Infiltrating Lipomatosis community WonderFIL smiles

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Sharing your journey with PROS can advance new treatments

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 by R.J. Palacio and the unique smiles of those affected by Facial Infiltrating Lipomatosis, or FIL for short.


As of January 2020 WonderFIL smiles is a registered non-profit organization, headquartered in Norway and run on a voluntary basis. If you have questions or are in need of support, please don't hesitate to contact us


We aim to support people with FIL & their families, and to empower them with information, knowledge and connectivity.


Facial Infiltrating Lipomatosis community WonderFIL smiles

"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."


- Linda Roeksund, Founder of WonderFIL smiles

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 © 2021 WonderFIL smiles. All rights reserved. WonderFIL smiles is a registered non-profit organization.