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

Danielle is one of our warrior mums.  Coby, her son, has Gorham-Stout disease and Danielle took on the Yorkshire Three Peaks Challenge to raise funds for vital research.  This challenge take in the 3 highest peaks in Yorkshire – Pen-y-ghent, Whernside, and Ingleborough.  The aim of the challenge is to walk the 25-mile route in 12Read More

Alfie’s Trust is delighted to support the 2nd Lymphangiomatosis and Gorham’s Disease Alliance Patient and Family Conference in Dallas.  Throughout the weekend there were opportunities for patients to meet face to face with other patients and their families, to hear presentations from clinicians and researchers on a wide range of topics, ask questions and toRead More

The Lymphangiomatosis and Gorham’s Disease Alliance (LGDA) and the Lymphatic Malformation Institute (LMI) were again selected to participate in the UPenn Orphan Disease Center (ODC) Million Dollar Bike Rid for research. The annual Upenn Medicine Orphan Disease Center’s Million Dollar Bike Ride was another incredible success this year in raising money for disease research.  Along with aRead More

The Marchington Singers are a choir from mid-Staffordshire who contacted Alfie’s Trust at the beginning of July advising us that one of their members had nominated Alfie’s Trust to receive a donation from a concert that the choir organised. We want to thank the Marchington Singers and their friends and family that supported the event andRead More

Tarynn Heasley from the UK is the mother of Saffron a young girl affected by lymphangiomatosis.  This year Tarynn decided to run 2 marathons and 2 ultra-marathons in 4 months to raise money for the Alfie Milne Lymphangiomatosis Trust. At the time of writing this article, Tarynn has completed 3 out of the 4 events. Read More