After being diagnosed with GLA, this Warrior set out to become an advocate for others like herself. In June she participated in Family Advocacy Day, sponsored by Speak Now for Kids, on Capitol Hill to highlight the importance of children’s health care. Leeya even interviewed Dr. Jennifer Arnold to learn more about her background in pediatric care and why she participated
» Read moreFinding the LGDA was a lifeline for Tracy and her family ‘Feeling that you belong somewhere – helps. Knowing that you can talk to someone that understands – helps. Being able to share your experiences so others can learn from it – helps. So why is it still the case that after being diagnosed with a rare disease you are
» Read moreThe LGDA and its worldwide partners, LGDA-Europe and Alfie’s Trust, invite you to participate in the 2nd Worldwide Awareness Day on Sunday, May 26, 2018. May 26 was selected for the awareness date in honor of LGDA Founder Jana Sheets, who was born on that day in 1974. This year we have invited medical professionals to share with the patient
» Read moreThe 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
» Read moreAlfie 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,
» Read moreAdvocates 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
» Read moreOn July 16, 2015, the Ensuring Access to Clinical Trials Act (EACT), S 139/HR 209, which will permanently remove a barrier to clinical trial participation for those with rare diseases was passed in the United States Senate by unanimous consent. EACT makes permanent the Improving Access to Clinical Trials Act (IACT), which was enacted in 2010 and allows those with
» Read moreThe recently formed Rare Lung Diseases Consortium (RLDC) is holding a planning meeting in July 2015 to prepare for a national summit of all patient advocate organizations and the specialists in pulmonary science and medicine anticipated for 2016. The RLDC is a unique collaboration among patient organizations, clinical investigators and the National Institutes of Health working together to accelerate clinical
» Read moreAt it’s meeting in May 2015, LGDA President Jack Kelly spoke to a group of about 100 participating oncologists in American Society of Pediatric Hematology/Oncology’s (ASPHO) Vascular Anomalies Special Interest Group, many of whom treat our patients with lymphangiomatosis and Gorham-Stout disease (GSD). Several of the vascular anomalies foundations were invited to speak at ASPHO this year.
» Read moreOn Wednesday, March 18, 2015, LGDA President Jack Kelly, joined 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 speakers
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