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The PIK3CA Related Conditions International Patient Registry

Make a difference for all affected with PIK3CA related conditions

by participating in our multi-lingual patient registry

A patient registry is an online system set up to collect, store, retrieve, and analyze information on individuals diagnosed with a rare disease. By joining the PIK3CA Related Conditions International Patient Registry you can choose to safely and securely share your de-identified data with researchers, as we all actively work to improve the quality of life for people affected by FIL and other condtitions associated with the PIK3CA-Related Overgrowth Spectrum.

Your participation in our patient registry will help us to advance our goals of finding treatments, options and hopefully a cure for these rare conditions in our lifetime.

Bring all your health information together in one place

With the Backpack Health app you can safely manage your own or your child's health records, track symptoms and share information in multiple languages with healthcare specialists, providers and caregivers.

BackPack Health SmartPhone

Register at Backpack Health or download the app! Find the registry under groups and join today! 

If you have any questions, please visit BackPack Health or

send an e-mail to PIK3CARegistry@clovessyndrome.org or help@backpackhealth.com.

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.  

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