Pursue Your Dreams through the #RAREis Scholarship Fund Offered by the EveryLife Foundation for Rare Diseases. The EveryLife Foundation for Rare Diseases is pleased to open applications for the second year of the #RAREis Scholarship Fund. Thanks to the support of Horizon Therapeutics plc, one-time awards of $5,000 each will be granted to up to…
Read MoreA Rare Disease Day Toolkit!
Do you know a student who is interested in raising awareness? February 28 (the rarest last day of the year) marks World Rare Disease Day. Julia Band Orange and Julia Finch have compiled materials to create a “Rare Disease Day In-a-Box”! Please click here to find an awareness video, a sample speech, an article for a school…
Read MoreCalling Young Adults…Do You Want to be a Rare Disease Leader?
Have you ever wanted to make an even bigger impact? Now’s your chance. The EveryLife Foundation for Rare Diseases is calling on young adults to join its YARR Leadership Academy. The Young Adult Representatives of RDLA (YARR) launched the YARR Leadership Academy, a series of on-line courses offered to a select group of young adults…
Read MoreNORD Drives Rare Disease Progress Through Patient-Powered Data With New IAMRARE™ Registry Members
Today, NORD issued a press release regarding how registries and natural history studies, like ours, are keys to understanding rare conditions and can help accelerate advancements that uncover new treatments. We are excited to be part of this group of rare disease foundations and thank NORD for its continued support of The APS Type 1…
Read MoreGlobal Genes Recognizes Todd Talarico as a RARE LEADER
We are pleased to share today that Global Genes recognizes APS Type 1 Foundation President, Todd Talarico, as a Rare Leader. Please click here to read about our foundation through Todd’s lens. We are thrilled to have Global Genes recognize our foundation and our fearless leader. We remain committed to our mission of increasing awareness,…
Read MoreNORD applauds critical health care reforms
NORD applauds critical health care reforms NORD and 18 other patient organizations representing millions of people with pre-existing conditions issued a statement on June 30 in support of specific patient protections and affordability provisions included in the Patient Protection and Affordable Care Enhancement Act, which passed in the House of Representatives on June 29….
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Do you or does someone you know live in Massachusetts?
Look what’s happening in Massachusetts! Check out your state and see if your state has a Rare Disease Advisory Council. Let us know so we can help spread the word. NORD led a patient advocacy group sign-on letter in support of the Rare Disease Advisory Council bill On July 20, NORD submitted a letter to…
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NORD Applauds Critical Health Care Reforms
NORD and 18 other patient organizations representing millions of people with pre-existing conditions issued a statement on June 30 in support of specific patient protections and affordability provisions included in the Patient Protection and Affordable Care Enhancement Act, which passed in the House of Representatives on June 29. This legislation would provide essential supports to…
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SAVE THE DATE: IDF/APS Type 1 Get Connected on August 8, 2020
Join us on August 8, 2020, at 1:00 p.m. ET to “GET CONNECTED”! We want to thank everyone who attended our first Get Connected Session! Our first event was a great success with close to 20 families participating. We had families from across the U.S., Canada, and Europe, with two families joining from Ireland! …
Read MoreThe EveryLife Foundation Announces #RAREis Scholarship Fund
We are pleased to share with you a scholarship opportunity offered by the EveryLife Foundation for Rare Diseases. The scholarship fund is intended to enrich the lives of adults living with rare diseases by providing support for their educational pursuits. Deadline for application is August 28, 2020 @ 3:00 p.m. CT. Please click here for…
Read MoreSisters share the love on Rare Disease Day
“You can imagine the loneliness of having a disease most people have never heard of, has no treatment, and is not being studied by medical researchers,” Julia said. “Through my Gold Award project, I hope to inspire my community to celebrate our differences and to be kind humans.” Full text of the article can be…
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