A 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…

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Calling 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…

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Global 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,…

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NORD 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?

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 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

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!  …

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The 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…

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Sisters 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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Drug Shortage Alert: Hydrocortisone Remains in Short Supply

Hydrocortisone tablets, which many in our community take on a daily basis to manage Addison’s disease, remain on the U.S. Food and Drug Administration’s shortage list. The shortage appears to be world-wide. We encourage you to monitor your medication supplies, for hydrocortisone and others, to ensure that you don’t run out and to start looking at other…

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