In collaboration with NORD and other rare disease advocacy groups, we are proud to support HB943, which would establish a Rare Disease Advisory Council in Montana. Read the letter of support below.
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Staying Active When It’s Cold
By: Gaby Talarico Winter is here in full force and what does that mean? That means cuddling under the blankets, drinking tea and watching movies…right? WRONG. Well…partially correct. Yes, you are allowed to have those cozy nights, but winter does not mean full hibernation and being couch bound until springtime. Being immunocompromised means it very…
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Happy Rare Disease Day 2025: Post #4
Happy Rare Disease Day to our incredible community! Today is a celebration of you. We honor the love and light you share with the world. We draw strength from your resiliency, creativity, and tenacity. We acknowledge your journey and stand with you through the ups and downs. We are proud of what we’ve accomplished together…
Read MoreCountdown to Rare Disease Day 2025: Post #3
Rare Disease Day is just over two weeks away, and we hope the resources we’ve shared so far have inspired you to recognize the day with a renewed excitement. In this message, we are covering ways to “Show Your Stripes.” Medical students are taught that hoofbeats mean horses, not zebras. The zebra is the unofficial…
Read MoreCountdown to Rare Disease Day 2025: Post #2
Our countdown to Rare Disease Day 2025 continues. As mentioned in our previous message, over the next few weeks we will be sharing resources to help our families observe Rare Disease Day (RDD) in a way that fits the individual interests, skills, and personalities of our unique community members. The aim of this email is…
Read MoreCountdown to Rare Disease Day 2025: Post #1
Happy 2025! We hope the new year is off to a good start for all our families. As mentioned in our last newsletter, the APS Type 1 Foundation will be sharing a number of resources leading up to Rare Disease Day on February 28th. Rare Disease Day (video link) is celebrated worldwide to raise awareness…
Read MoreIT’S NOT TOO LATE TO GIVE
We are deeply grateful for the incredible generosity shown this Giving Tuesday, with over 60 individuals coming together to make a meaningful impact through their contributions. Giving Tuesday may have passed, but there’s still time to participate in the giving season. You might be thinking, “I have no idea what to do.” Don’t worry—you’re in…
Read MoreINDO-US BRIDGING RARE SUMMIT MEETS IN DELHI, INDIA
Representing the APS Type 1 Foundation, Board Member Pushpa Rao exhibited a poster on APS Type 1 at the Indo-US Bridging Rare Summit in Delhi, India, seeking to expand the network, include more patients of Indian origin in our APS Type 1 (APECED) Registry, and inspire research that benefits all. Over two and a half…
Read MoreRARE DISEASE DAY 2025: FRIDAY, FEBRUARY 28
APS Type 1 is considered a “rare disease” because it affects fewer than 1 in 2,000 people. However, with over 6,000 conditions meeting this definition, rare diseases are anything but rare. Rare Disease Day provides a yearly opportunity to raise awareness of the 300 million people worldwide living with rare diseases. Learn more about specific…
Read MoreA SEASON OF GRATITUDE: CELEBRATING 10 YEARS OF THE APS TYPE 1 FOUNDATION
The holiday season is here – a time for gratitude, celebration, and reflection. This year is especially meaningful as we mark the 10th anniversary of the APS Type 1 Foundation. Join us as we look back on a decade of progress and hope for the future. Wow, where did this year go? This time of…
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AN ANNIVERSARY CELEBRATION IN SUPPORT OF THE APS TYPE 1 FOUNDATION
Congratulations to Kevin and Jamie on their 30th wedding anniversary. This milestone is not just a celebration of their enduring love and partnership but also a testament to their commitment to making a difference in the lives of others. In lieu of traditional gifts, Kevin and Jamie chose to channel their celebration into a cause…
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