If you are a patient suffering from Lymphangiomatosis, Alfie’s Trust is here to help. But here are ways you can help yourself and others in the same situation.
Join the following registries:
International LGDA Registry for Lymphatic Malformations
When you register as a patient in the International LGDA Registry for Lymphatic Malformations you are helping worldwide research to unlock the mysteries of Lymphangiomatosis and Gorham’s Disease.
We hope you decide to join the LGDA Registry. Each individual who joins contributes to furthering the mission of the LGDA – helping those affected by rare lymphatic and osteolytic bone diseases.
For more information about the LGDA Registry and to join, please visit their website www.lgdaregistry.org
Lymphatic Anomalies Registry
The Vascular Anomalies Centre at the Boston Children’s hospital has established a registry for patients with rare and complicated lymphatic conditions.
The Lymphatic Anomalies Registry seeks to collect clinical data from patients that could improve worldwide understanding of these diseases. The information gathered may help to learn more about what complications to expect, which therapies are more effective than others.
Become a donor
Planned Surgery? Are you having a biopsy to confirm a diagnosis?
Please discuss with you doctor if there is an opportunity for tissue to be taken and stored for research. Please contact us for further information.
Share your story
Every patient and their family have a story to tell. Nobody’s journey is ever the same. By sharing our experiences, we help those who are new to our patient community as well as those who are veterans of this battle.
You don’t have to be a professional writer to tell your story. Every story about our “Warriors” is written by the patient or a member of their family—usually a parent. These stories help to raise awareness about these conditions and give physicians an insight to what the journey is like for patients and their families. If you would like to share your story please contact . Please read the following guidelines carefully before sharing your story.
You must be 18 years or older. Patients younger than 18 may write their own story, and those between 12 and 18 are encouraged to do so, but his/her parent or guardian must consent and submit it.
Include the full name, date of birth, address, phone and email of the patient and the writer (if other than the patient) and the person submitting the story (if other than the writer), with your submission. This information will not be published, but we need it in order to contact you.
Include a close-up photo of the patient to be published with the story. This does not have to be a recent photo. You may also include 2 or 3 additional photos. All photos should be at least 250 x 350 pixels.
Only first names and age at diagnosis of living patients are published. For those submitting the story of a loved one who passed away from one of these diseases, the choice to publish the full name and dates of birth and death is entirely yours.
Your story may not be from diagnosis to present. You may choose to write about a particular event or period of time. You also may submit poetry you have written about your experience, with or without a story.
Write clearly and concisely for a general audience.