Category Archives: Feature

Transition from Pediatric to Adult Care

Representing the LGDA at the 10th Annual Health Care Transition Research Consortium Research Symposium and the 19th Annual Chronic Illness and Disability Conference: Transition from Pediatric to Adult-based Care, in the Texas Medical Center were LGDA Director of Patient Programs, Lisa Klepper, and LGDA board member, Tiffany Ferry. The meetings were held October 24-26, 2018 and co-hosted by Baylor College

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Birthday Party Raises $5000

On July 29, 2018, the family of Adrian Santos hosted its second party to celebrate his 4th birthday and raise awareness about kaposiform lymphangiomatosis (KLA) and money for the LGDA to support research efforts. Once again, Adrian’s great aunt Linda Sutherland organized the event. Activities for the kids included face painting, animal balloons, crafts, and a Mad Scientist demonstration. Cleveland

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LGDA Hosts First Non-Event Fundraiser

  You read that correctly. Our Non-Event is guaranteed to please everyone everywhere because you’re doing whatever you want, which may or may not include absolutely nothing. We’re not holding an event. We’re not booking a hall, picking a menu, hiring entertainment, scheduling activities, twisting arms to get volunteers, hoping for good weather and crossing our fingers people find time

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2 Grants Available for GLA/GSD Research

The Orphan Disease Center (ODC) at the University of Pennsylvania invites researchers to participate in the 2017 Million Dollar Bike Ride Pilot Grant Program.  The program is now open and offering 33 different research grant opportunities focusing on 23 different rare diseases.   This program provides a one‐year grant to support research related to a rare disease represented in the

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Family Hosts World #LGDAwareness Event

The image is of an article that appeared in the local newspaper where the van der Velden family lives in The Netherlands. The family is hosting an event in conjunction with the first World #LGDAwareness Day on May 26, 2017. Below the image is a translation of the text.   Family from Dordrecht asks for awareness of rare disease Fifteen-year-old

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Rare Disease Day in Scotland

Alfie Milne Lymphangiomatosis Trust founder Tracy Milne, was asked to speak about her experience in parenting a child with a rare disease at an event in Aberdeen, Scotland, on Rare Disease Day 2017. She has very graciously given permission for us to share the remarks she made at that event:   When your child is given the diagnosis of lymphangiomatosis,

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Michigan Rare Disease Day Event

Advocates Visit Michigan State House to Lobby for Rare Disease LGDA Warrior Mom Sandra Goldfarb joined 75 other rare disease advocates at the Michigan State House in Lansing on February 28, 2017, to lobby for the establishment of a Rare Disease Advisory Council in Michigan.  This Council will give rare disease patients a voice in state government and provide educational

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2016 MDBR Funds 2 New Studies

  The Lymphangiomatosis & Gorham’s Disease Alliance (LGDA) and the Lymphatic Malformation Institute (LMI) are proud to announce the two projects selected to receive the LGDA-LMI 2016 MDBR Rare Disease Research Grants. The LGDA and LMI joined together Saturday, May 7, 2016, in Philadelphia to participate in the 3nd Annual Million Dollar Bike Ride. Together the teams raised $80,000, which

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