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 MoreWe 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 More“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…
Read MoreHydrocortisone 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…
Read More
With funding from the Global Genes’ Continuity of Care RARE Patient Impact Grant, the APS Type 1 Foundation is offering grants to APS1 Households Impacted by COVID-19. COVID-19 has had widespread impacts throughout our communities in more ways than we can know. What do know, however, is that COVID-19’s impact on the rare disease community…
Read More
The APS Type 1 Foundation, in partnership with Immune Deficiency Foundation (IDF), is offering a diagnosis-specific Get Connected Group for the APS Type 1 community on June 6, 2020, 1:00-2:30 p.m. ET. The program is being offered virtually through Zoom, the online meeting platform accessible through computer, smart phone, or telephone. This Get Connected Group…
Read MoreDear APS Type 1 Family, We hope that you and your families are fairing well through this challenging pandemic. Although this is a stressful time for all of us, it also provides us with an opportunity to strengthen our bonds by spending time connecting with family and friends either in our homes, virtually, or by…
Read MoreAPS Type 1 Family and Friends, As we complete our first week at home of what looks to be a long Spring ahead, we hope you have settled into your new normal and that you are all safe, healthy, and surrounded by loved ones. The news continues to provide important information around how you can…
Read More
APS Type 1 Families and Friends, As a national emergency was announced in the US yesterday, the Foundation is taking this moment to make sure we are doing everything we can to help ensure the safety and health of our APS Type 1 Family. We’re sure you have received a lot of communications regarding how…
Read More
Jennifer Orange, October 2019 In late October, I travelled to Washington DC to attend the National Organization for Rare Disorders Summit. For me the Summit had three parts. I spent Sunday, October 20 with a group of inspiring leaders of rare disease organizations in a session designed to facilitate organizational development. It was remarkable how…
Read More
In August my company asked me to pull together a presentation on Advocacy. Our patient advocacy coordinator knew I was involved with a foundation and asked if I’d share my advocacy experience. I agreed.
Read More