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Facial Infiltrating Lipomatosis community WonderFIL smiles FILamily

WonderFIL News Facial Infiltrating Lipomatosis

Andrea with Facial Infiltrating Lipomatosis

Main features of Facial Infiltrating Lipomatosis

What is FIL?

Facial Infiltrating Lipomatosis, or FIL, also called Congenital Infiltrating Lipomatosis of the Face,

an ultra-rare, noninherited overgrowth condition which 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 which can be isolated or associated with other conditions on the PIK3CA-Related Overgrowth Spectrum, or PROS.

WonderFIL smiles letter to newly diagnosed

JOIN OUR ONLINE COMMUNITY

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

NEWLY DIAGNOSED?

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

BROCHURES ABOUT FIL & PROS FOR KIDS

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.

ALLSTRIPES PROS PROGRAM

Share your FIL journey and advance research. Join others with PROS and their 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.

BLOGS

Read blogs by individuals affected by Facial Infiltrating Lipomatosis.

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 completely 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

About Facial Infiltrating Lipomatosis

About WonderFIL smiles

Donate to support FIL/PROS research

Recently diagnosed?

Brochure about FIL and PROS for kids

✉️ info(a)wonderFILsmiles.com

https://www.facebook.com/FacialInfiltratingLipomatosisCommunity/

Global Genes Rare Foundation Alliance Member

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.