Welcome to the Lymphangiomatosis and Gorham’s Disease Alliance–UK (LGDA -UK), previously known as Alfie’s Trust. The Alfie Milne Lymphangiomatosis Trust became a registered charity in 2012 after Alfie, the son of Tracy and Mark Milne, was diagnosed with lymphangiomatosis at the age of 18 months. At that time there was no support available nor researchRead More
This is the time of year when the LGDA focuses on two major events. Our annual #LGDAwareness Day on May 26 and the Million Dollar Bike Ride. Through our social media channels, you will have seen that the Million Dollar Bike was due to take place on the 13th of June in Philadelphia. Due toRead More
We would like to thank Emily Walker for organising a Charity Psychic Supper in aid of Alfie’s Trust. Emily is a friend of our warrior Em Smith. Thank you to all of Em’s friends and family who went along and supported the evening. A fantastic £322 was raised.
Rare Disease Day 2020 – How are you going to celebrate? Rare is many. Rare is proud. Rare is strong.
It is great to finally announce this amazing piece of news. Our international partner, the Lymphangiomatosis and Gorham’s Disease Alliance, has just been awarded $452,000 through the Chan Zuckerberg Initiative. There are some very exciting projects that can now get underway using this funding. Well done team LGDA. Learn more about the project: https://bit.ly/3943CZJ
Happy New Year. What a way to start the new year! What a way to start the new year! It was great to receive an email this week informing us that £1,750 had been transferred into our bank account. EFG Private Bank selected Alfie’s Trust in 2019 as their charity of the year. ThankRead More
Our spring newsletter ‘Channels’ is now available. Check out what is going on around the globe from research to fundraising. https://myemail.constantcontact.com/Channels–LGDA-Spring-Newsletter-2019.html?soid=1129921438039&aid=vW6CS132v0Y
Have you signed up to the Rudy Study? The Rudy Study is a UK based study with an interest in understanding more about all aspects of rare diseases. The study is open to patients with Gorham’s disease (GSD) and/or lymphangiomatosis (GLA/KLA). The Rudy Study aims to transform clinical care for participants through patient-driven research. TheRead More
Our donors’ commitment is the fuel for our programs of research, education and support. Our path towards a better future for those living with GLA/lymphangiomatosis, GSD, and KLA would not be possible without their dedication! For Rare Disease Day, we hope that you will “Support Your Rare” by making a donation that will support theRead More
Would you like a second opinion from an expert doctor? Due to the success of two previous expert clinics organised by Dr Lopez-Guttierrez at La Paz Hospital in Madrid, further clinic dates have been released that may be of interest to you. The first date is Thursday 20th December, with the second following on theRead More