Author Archives: Admin

Million Dollar Bike Ride

Donate today to help LGDA raise $20,000 On Saturday, May 9, 2015, Team LGDA will participate in the 2nd Annual Million Dollar Bike Ride in Philadelphia, Pennsylvania, to raise more than $1 million for rare disease research. All funds raised for Team LGDA will be used for a lymphangiomatosis and Gorham’s disease research project chosen by the LGDA.  Once Team

» Read more

Georgia Rare Disease Day State House Event

Rare Disease Day is an annual awareness day celebrated around the world dedicated to elevating public understanding of rare diseases and calling attention to the special challenges faced by patients. Rare Disease Day takes place every year on the last day of February (February 28 or February 29 in a leap year)—the rarest date on the calendar—to underscore the nature

» Read more

Capitol Hill Briefing

On Wednesday, March 18, 2015, LGDA President Jack Kelly, will join other members of the Rare Bone Disease Advocacy Alliance (RBDAA) in leading a discussion about ways to improve the quality of life for those affected by rare bone diseases like Gorham’s disease and lymphangiomatosis through a strengthening of the federal government’s response to this national public health issue. Featured

» Read more

Rare Disease Day Event

  LGDA President Jack Kelly to speak at Rare Disease Day Event   The LGDA and other advocates have joined with the National Organization for Rare Disorders (NORD) to sponsor a Statehouse Event dedicated to educating and informing the public, elected officials, legislative staff and the media: Georgia Rare Disease Day State House Event Friday February 27, 2015 State Capitol

» Read more

Warrior Featured in ATS Publication

ATS Patient Voices 3: Their Stories, Their Words, a new ebook release by the American Thoracic Society Public Advisory Roundtable (ATS PAR), features the story of LGDA Warrior Megan Gray’s journey with lymphangiomatosis. Megan’s story will be familiar to many of those diagnosed with lymphangiomatosis and their families; the LGDA is grateful to Megan and her family for sharing it

» Read more

Vascular Anomalies Special Interest Group

The Vascular Anomalies Special Interest Group’s (SIG) mission is to improve the care of children and young adults with vascular anomalies through multicenter collaborative research. The goals of this special interest group include: current continued education to ASPHO membership in the diagnosis, treatment, and management of patients with vascular anomalies multicenter collaboration to establish standards of practice for patients with

» Read more

ASBMR 2014 Annual Meeting

As a member of the Rare Bone Disease Patient Network (RBDPN), the Lymphangiomatosis & Gorham’s Disease Alliance (LGDA), and associate members of the RBDPN, participated in the National Bone Health Alliance/Rare Bone Disease Patient Network Workshop: Mechanistic and Therapeutic Insights into Skeletal Biology Learned from the Study of Rare Bone Diseases on September 11, 2014, in Houston, Texas. 

» Read more
1 7 8 9 10