News
4th november 2011 - 1st year LGDAE
One year ago Lymphangiomatosis & Gorham’s Disease Alliance - Europe received legal status as a registered organization. We started networking, did this website and got contact to patients and doctors around Europe.
Patient stories
Help children like Alfie Milne to find a cure against lymphangiomatosis: www.alfiemilne.org.uk
Meeting of EU and US for cooperation on the research into rare diseases
“The European Commission (EC) and the USA’s National Institutes of Health (NIH) held a joint workshop in Reykjavik, Iceland, on 27-28 October, to discuss how to foster transatlantic cooperation on research into rare diseases.” More at:
www.orpha.net/actor/EuropaNews/2010/101117.html
Young Mother with Rare, Deadly Bone Disease Can Now Cuddle Her Baby Again After “Last Resort” Spinal Fusion Surgery
“Newswise — Laurie Harms, Los Angeles, feared she’d never hold her infant daughter, Sky, again. A devastating and extremely rare bone-eroding disease – Gorham-Stout syndrome –…” read more at: www.newswise.com/articles/view/570061/
The founding meeting of Lymphangiomatosis & Gorham’s Disease Alliance - Europe took place on March 24th 2010 to give birth to this pan-European organization. On 4th of November 2010 we received legal status as a registered organization and on 30 November the LGD Alliance Europe launched this website. Let us know what you think!
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