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to the official website of Lymphangiomatosis & Gorham’s Disease Alliance - Europe a non-profit pan-European organization that helps patients with lymphangiomatosis / Gorham’ disease and their relatives, supports research and fund raising and spreads information about this rare disease complex.

Thank you for visiting our website today and welcome to our small community. We are a patient organisation run solely by volunteers helping to support patients and their family members living with the challenges of Lymphangiomatosis and Gorham’s Disease.
When we read our patient stories there is one factor that we hear time and time again. You are offered no support and are given very little information after diagnosis. Many people tell us they feel very alone and isolated - they have a child/family member with a rare disease and only see an uncertain future ahead. This is where the LGDA – E wants to make a difference.
Being a small community it is very important to build a good relationship with patients so we can gather information to learn more about the diseases and to know where the help is needed. We will always do our best to answer your questions using the expertise we have available within the organisation.

We aim to offer.....
Patient Support

  • hope and support for patients and families
  • contacts with other families and patients facing the same challenges and fears
  • to keep you up to date with the latest news and achievements of the LGDA and LGDA - E
  • to put you or your doctor in contact with a medical advisor familiar with Lymphangiomatosis or Gorham’s disease
  • where possible, to communicate in any major European language

We look forward to hearing from you. If you have any questions please contact

 

Patient Registry

Get involved! - Join the International LGDA Patient Registry

The LGD Alliance is pleased to announce the establishment of the
International LGDA Registry for Lymphatic Malformations (LGDA Registry), a major goal of the LGDA since the organisation was founded. The LGDA Registry will be instrumental in accelerating the pace of basic and clinical research.
We cannot emphasize enough how important it is for you to complete the registry. There are so few sufferers that the information that you give is very important in helping us to understand more about the disease and to move research forward. In order to do any form of research we need patient information first.

News, Events & Stories

September 22, 2014
Eurordis approved the Lymphangiomatosis & Gorham’s Disease Alliance - Europe to be part of their network.
                  

June 13-14, 2014 - Dallas, Texas
1st LGDA Patient & Family Conference

Learn more about lymphangiomatosis and Gorham’s disease from specialists and hear first-hand from researchers in the field about what they are doing now, the plans for future research, and how you can help. There also will be ample time for you to meet and visit with other patients and families living with lymphangiomatosis and Gorham’s disease.
Detail information:
1st LGDA Patient & Family Conference

Patient stories
Help children like Alfie Milne to find a cure against lymphangiomatosis:
www.alfiemilne.org.uk

Contact us: 

 

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