Patient Support

Patient support is the core of our activities. When facing a rare disease, it is a relief to know, that you are not alone, there are others in the same situation going through the same struggle and looking for ways to lead their lives despite the limitations that the disease can bring. We aim to offer

hope and support for patients and families
contacts with other families and patients facing the same challenges and fears

Do you just want to talk to or write to someone who has been at the same point before you? Or get directly connected with a patient or family going through similar experiences, maybe even from your own country? You may contact the patient support of LGD Alliance:

Currently we mainly work in English, but we aim to provide contact and help in any major European language (currently Spanish, Germany, French).

Would you rather anonymously discuss, share opinion and experiences with others facing this challenge? You may visit the discussion forum of LGD Alliance at www.lgdalliance.org

Even more challenging than finding a peer group, finding a physician with experience or even genuine interest in treating you or your child can be difficult. As lymphangiomatosis and Gorham’s disease are truly ‘orphan’ diseases whose prevalence is not properly known, any one physician, any one hospital or even any one country will see few cases. And even the best professionals find getting correct and up-to-date knowledge for their patients hard. We seek to help by

being able to put you or your doctor in contact with a medical advisor familiar with lymphangiomatosis or Gorham’s disease
together with LGD Alliance, forming an international network of clinicians and Vascular Anomaly Centres willing and able to assist patients affected with lymphangiomatosis or Gorham’s disease

To get contact information for these institutes, and information on the proper means to reach them, contact patient support at the LGD Alliance:

You can consult institutes and clinicians in our network from any part of the world. Currently three institutes in Europe have been integrated into the network - we seek further contacts with recognized institutes and clinicians experienced in diagnosing and treating lymphangiomatosis and Gorham’s disease patients. We would like the network to cover as many European countries as possible. These institutes and clinicians are prepared to deal either with medical professionals or directly with patients, though we encourage consultations to be arranged through your own treating physician. The network is formed together with our sister organization LGD Alliance.

Proper information and the latest knowledge on lymphangiomatosis and Gorham’s disease is hard to find. Published information on lymphangiomatosis and Gorham’s disease consists mainly of case reports and other specialist medical literature which can be very hard to understand and does not always reflect the patient experience of these diseases [we might need to be a bit careful about terminology here: ‘medical’ can mean medicine as opposed to surgery]. Currently we provide information for patients and families through these web pages, the web pages of our sister organization the LGD Alliance, and through patient support (support(at)lgdalliance.org).


	You can also register at www.lgdalliance.org Channels illustrating the latest news and achievements of LGD Alliance and LGD Alliance - Europe. In the near future, we hope to provide an information booklet for patients and families to help the recently diagnosed.

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