Newsletter June 2022

News from the LGDA Europe community

Celebrating LGD Awareness Day 2022!


LGD Awareness Day is an opportunity for the community to celebrate this special day.  Sharing stories and building memories. We would like to shine a light on Sete, a 10-year-old diagnosed with Gorham-Stout disease from Belgium.  Sete and his family held a small family party to celebrate LGD Awareness Day. 
We hope you all had a wonderful LGD Awareness day 2022

Make a difference

The Million Dollar Bike Ride Experience

The Million Dollar Bike Ride (MDBR) event is a fun yet powerful movement established to raise money for rare disease research. Our community has raised and invested nearly $800,000 to fund critical CLA, GLA, and KLA research through this great event.  This year we are asking for all our friends and partners to dig deep to help us make an even greater impact for life-changing research.  Dr. Max Itkin, one of our first UPenn ODC grant recipients, wants you to understand why. 

The LGDA Europe has joined forces with LGDA USA and LMI to support Team CLA Warriors in the 2022 Million Dollar Bike Ride event.   Make a gift today in support of our team.  All gifts must be received by 28th June. 


Get involved

Announcing the Patient Community Advisory Council

The Patient Community Advisory Council (hereafter PCAC) is designed to give our community a voice as well as opportunities to interface with LGDA leadership. 
We are looking for EU representation! If you would like more information, send an email to 

Your voice, Your story

We want to hear from our community – patients, families, friends, and partners! The LGDA invites you to submit either a short article or video. 


Become a LGDA Europe member

If you are not a member yet, making a small monthly contribution will enable us to keep working to support, educate and give hope to patients with CLA’s and their families.

Become a member here: