Join Us

We, LGD Alliance - Europe, are a small voluntary based organizations. Our patient community is limited in size and scattered all around the Europe. Still, we seek to unite all those affected by these diseases in the Europe, working across borders, nationalities and languages. To do this we would really like to get active involvement from the widest range of countries.

You might want to just stay tuned and be informed of our activities, or maybe you could help with specific small tasks, organize local events or even get deeply involved into our little community. It will all help with our aim of a more secure future for those affected by lymphangiomatosis or Gorham’s disease. We’d be pleased to have you join us, whatever level of involvement you are able to offer. We warmly welcome all patients, families, friends and carers, plus those who have already lost a loved one to these diseases.

Do you want to be informed and included into our preliminary database of patients? Getting confidentially registered into the informal database of patients helps us enormously towards creating a formal patient registry, which would be a real step forward towards better research and care. To get included please contact us at:

Have you already come a long way with the disease? Perhaps you have been through a few battles and yet survived, or seen someone close to you do the same? If so, you might want to be a support patient or family for those recently diagnosed, just to listen, share practical tips for everyday life and “walk” together giving and getting power in the difficult and rare situation poorly understood by outsiders. To get further advise and requirements, you may contact:

Do you have specific skill or talent you could lend to the Alliance? Or do you consider yourself able and willing to help based on your education, work experience or background? All type of people, skills and help are appreciated, but see below for some roles we are particularly interested in filling. If you want to get involved, but don’t find a task suitable or interesting for you, just contact us and we can together find a task where you can feel useful for the patient community. For volunteering you may contact:


	You may also want to check the pages of the LGD Alliance for volunteering positions or contact at:

Volunteering for either one of these alliances will help towards the same goal. Roles we are particularly keen to fill currently include:

National representatives for each European country. – So that LGD Alliance - Europe can follow what is going on on rare diseases in each country, we would like to have national representatives in as many countries as possible. You could act as a national contact point for patients in your country or for speakers of your language, and help to build up knowledge of medical professionals and institutes with experience of lymphangiomatosis or Gorham’s disease in your country.
A Graphical Designer ,to design and produce the first information leaflet on LGD Alliance - Europe in order to raise awareness among the general public.
A Media Assistant for Europe to assist the LGD Alliance media coordinator especially to bring a European angle to our communications and awareness-raising. You could help us by following the local, national and European media and contacting them with letters, suggestions for coverage and with updates on our activities. At a European level we would like to organize more efforts to approach specific television dramas, talk shows, radio and other shows that could potentially feature one of these rare conditions. You could also assist and guide patients in contacting their own local media to get their own stories published, or write a column for the LGD Alliance’s newsletter, Channels, illustrating the work in Europe. You might not be able to start all these activities, but all assistance would be welcome!

Contact us:


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