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 MoreRare 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 MoreOur 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 MoreHappy 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 MoreWe 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 MoreRepresenting 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 MoreAPS 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 MoreThe 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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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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You have the power to make a significant impact on the future of the APS Type 1 community by engaging with the networks of family, friends, employers, coworkers, and community members around you. Today, we are celebrating four stories that we hope will inspire you to harness the collective power of many. READ MORE
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As many in our community return to school or start a new academic year, it is important for students and their families to be well-prepared. This is especially crucial for those transitioning into elementary school, middle or junior high, high school, or college. To support a smooth and successful school year for individuals with APS…
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