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!

Events

 29 February 2012 - we support Rare Disease Day 2012

Three families from UK will raise awareness on rare diseases by displaying information on what Rare Disease Day is about, the  work of the LGDA / LGDA-E and patient story's to highlight the seriousness of these diseases.

These information will be visible in three hospitals throughout the UK, Bristol Children's Hospital, John Radcliffe's Hospital in Oxford and at  Royal Aberdeen Children's Hospital.

Family of Alfie Milne will sell homebaking on that day. Press release to local and national papers are on the way. Also local business and school's Art Club will be involved.

The Medical advisor of the LGD Alliance - Europe, Prof. Dr. Jochen Roessler, gave a presentation on Gorham’s disease at the Congress of the German-speaking Lymphologists Society in Germany in summer 2011. More on the meeting: www.lymphologie2011.uni-goettingen.de

Walk for lymphangiomatosis in UK
Ethan is less than 2 years old and suffers from lymphangiomatosis. His Dad did a military style walk around Britain in summer 2011 to raise awareness of the disease. More at: walkforlymphagiomatosis.webeden.co.uk

The Morning Glory Campaign took place in summer 2010 to raise funds for research. Read more…