Advocacy News


 

Orphan Drug Act Resolution Introduced in Congress

Senator Hatch and Representatives Lance and Butterfield introduced a resolution that heralds the success of the Orphan Drug Act (ODA) and calls for continued support of the legislation. This year marks the 35th anniversary for the ODA. That means 35 years of increased hope and treatments for the rare disease ...
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Warrior Advocates for Others

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 ...
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Finding Help and Support

Finding 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 ...
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#LGDAwareness Day 2018

The 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 ...
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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 ...
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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: ...
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