Support. Educate. Hope.
The LGD Alliance Europe is the European organisation for patients with Rare and Complex Lymphatic Anomalies. We want to connect patients, family, clinicians and researchers affected by and dedicated to these rare diseases in Europe. Together we can find the strength to deal with Complex Lymphatic Anomalies.
Provide support, education and hope to patients and families affected by Rare and complex Lymphatic Anomalies. That is our mission.
Just as important is to promote basic and clinical research on the cause of Lymphatic Anomalies and support the development of effective diagnosis, identifying effective treatments and ultimately a cure for these diseases.
In order to realise its mission, the LGD Alliance Europe does the following:
- Raises general public awareness and distributes comprehensive information on Complex Lymphatic Anomalies.
- Offers support and hope for patients and families by enabling them to make contact with others.
- Assists patients and their family members by providing general information on these diseases and contacts to the doctors and clinical centres with experience treating these patients.
- Maintains an internet presence for patients, families, healthcare professionals and the general public.
- Works with umbrella organizations for rare diseases, the European Community and other rare disease health organizations to advocate for rare disease policies and research funding collaboration.
- Promotes research to achieve a more active approach towards developing and executing a research strategy and program for the study of Complex Lymphatic Anomalies.
Many of the activities are planned and executed in cooperation with the LGD Alliance, a US-based 501(c)(3) public charity. You can visit their website at www.lgdalliance.org.
We are all in this together
The LGD Alliance Europe is a non-profit organisation to give hope and find help to all who are affected by these diseases. We work mostly with volunteers. There is a board with representatives from many European countries, which has delegated the daily tasks to executive team.
David Williams – Netherlands
David was diagnosed with Gorham Stout Disease in 2019. In his search to understand the condition and its implications he found the LGD Alliance Europe. After coming to terms with his own journey he decided to join the volunteer team and, where possible, to help others in a similar situation.
Mary Keniry – Ireland
Mary’s youngest daughter, Aine, was diagnosed with GLA and GSD in 2014 after waking up one morning, at the age of 12, with a pain in her neck. Aine receives regular treatment to prevent disease progression. “Having a child diagnosed with an extremely rare disease was a life changing event in our family” said Mary, “and the LGD Alliance Europe has allowed us to connect with a worldwide group of families just like our”. Mary volunteers to help promote knowledge and information about CLAs among patients and their families.
Tracy Milne – United Kingdom
Her youngest son was diagnosed with GLA in 2008 where her journey began to find a way to help her son. In 2012 she started an affiliation, Alfie’s Trust, a registered charity in the United Kingdom (now LGD Alliance UK) to help and support their work. Tracy was a member of the LGDA Board of Directors for 3 years before accepting the role of LGDA Assistant of Patient Programs. She continues to serve LGD Alliance Europe as Patient Support Leader for the European Community.
Matthias Collier – Germany
His daughter was diagnosed with Gorham’s disease in 2008 at the age of 9 months. She died in 2009. In search for help and information he found the LGDA in America, Prof. Dr. Rößler from Germany and he got in contact with one patient in Finland. Together they tried forming a European branch started in 2010. Since then, a small group of people help patients from Europe in their difficult situation.
Mireille Vorsselmans – Belgium
Her son Sete was diagnosed with Gorham’s disease at the age of 4 months (2012). In her search for information and looking for other patients and families, she found the LGD Alliance Europe. Inspired by other European volunteers the family of Sete decided to start LGD Alliance Belgium in 2016. They want to help raise awareness and support other patients and families in Belgium.
Our Volunteer Team Roles
Executive Director (Interim)
Also Chair of General Board. See details above.
Patient support and Communication
Also member of General Board. See details above.
Finance and Communication
Also member of General Board. See details above.
Ioana Teuceanu – Romania
Her daughter, Maya was diagnosed with a microcystic lymphatic malformation at 23 months. In the search of specialists for this rare disease, Ioana found LGD Alliance Europe in 2019 and became a volunteer in 2020. She is open to the idea of starting a local non-profit organization part of LGD Alliance Europe because there are few to no specialists in Romania with expertise in properly diagnosing and treating Rare Lymphatic Malformations.
Volunteers and Patient Advocates
Paz Fernández – Spain
After a family member was diagnosed with GLA in 2018, she was searching for support and information, and she heard about LGD Alliance Europe. By knowing them, she got answers to many questions. Helping others in this journey is also a rewarding experience for her.
Allegra Resch – Italy
She became volunteer of LGD Alliance Europe in 2019. In the future she would like to found a local section of LGDA in Italy. In the meantime she tries to help Italian patients and their relatives to communicate with LGD Alliance Europe.
Egil Herland – Norway
His son, Joel, was diagnosed with Gorham’s disease in 2014, 3 years old. After a couple of years searching for support and information, he got connected to LGD Alliance Europe and became a volunteer.
Raghad Alzahrani – Saudi Arabia
Raghad is a graduated medical specialist who has been diagnosed with GLA and Gorham’s Disease since 2009. She believes that having such a rare disease is challenging, but that only fuelled her passion to pursue her goal of becoming a scientist in the field of lymphatic anomalies. She started working with LGD Alliance Europe to make a difference and raise awareness for patients with CLA in Middle East who are facing the same obstacles she once faced. These struggles that make our stories that much worth telling.
Anne – Germany
Anne is patient herself and volunteer for many years. She joined our organisation because she believes that the LGD Alliance Europen can only exist because of volunteers, even if they don’t have much time: “sharing the work makes the tasks easier.” Anne is dedicated to tell doctors about our diseases, because it happens too often that patients are misdiagnosed or not diagnosed for a long time: “Through the LGD Alliance patients get a chance to exchange experiences. And together we can build professional relations with doctors all around Europe because we need them and they need us.”
2007 – LGD Alliance
The late Jana K. Sheets (1974-2010) founded the American LGD Alliance after she was diagnosed Lymphagiomatosis (now called GLA). Her father Jack Kelly is continuing her work.
2010 – LGD Alliance Europe
The non-profit LGD Alliance – Europe was established in 2010 as a European sister organisation of the US based LGD Alliance.
2011 – LGD Alliance UK (UK)
In 2011 Alfie’s parents, Tracy and Mark founded Alfie’s Trust, a registered charity in Scotland (SC043165). Research is vital in order to give sufferers a future. In 2020 the trust was renamed LGD Alliance UK.
2015 – LGD Alliance Nederland (NL)
Two parents (Aaike and Ange) of different patients (Bo and Ella) founded the LGD Alliance Nederland in the Netherlands.
2016 – LGD Alliance Belgium (BE)
Mireille Vorsselmans, mother of Sete started the LGD Alliance Belgium.
The LGD Alliance Europe is registered in the Netherlands. The foundation is recognized as non-profit by the Dutch authorities. And it is a charity with ANBI status, given by the Dutch tax office.
Within the Netherlands the foundation also uses the name LGD Alliance Nederland.
LGD Alliance Europe
IBAN: NL67 TRIO 0198 4315 38
Foundation registration: 63159333
RSIN or tax number: 855117540