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
It’s Christmas Time! With Christmas fast approaching there are many ways to support the Alfie Milne Lymphangiomatosis Trust, and it needn’t cost you a penny more! If you shop online for Christmas, why not do so via EasyFundraising or Amazon Smile – no extra cost to you, but a lovely donation to Alfie’s Trust. EasyfundraisingRead More
On October 10th Tracy was invited to speak at The Glasgow Rare Disease Showcase. Sharing her son’s patient journey, from diagnosis to starting treatment, she will outline the challenges of navigating and understanding the healthcare system, how bad things had to become before her son’s condition was taken seriously, and how taking back control ledRead More