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We were delighted to see many of you at our 5th International Symposium on APS Type 1. Our symposium brought together APS Type 1 families and medical experts from around the globe. Patients, families, caregivers, researchers, and clinicians had a chance to meet and get to know each other. We are particularly grateful to the doctors…

Join board members, Robin Finch and Laura Rivard, at Global Genes’ 12th Annual RARE Advocacy Summit, September 19-21, 2023, in San Diego, California. Each year, Global Genes convenes one of the world’s largest gatherings of rare disease patients, caregivers, advocates, healthcare professionals, researchers, partners, and allies at the RARE Advocacy Summit. This is an unparalleled…

In the early hours of July 28, 2017, Senator John McCain voted to preserve the Patient Protection and Affordable Health Care Act, better known as the “ACA” or even much better known as “Obama Care.”  There are two key provisions in this act that are of particular importance to our group:  1. Insurers are mandated…

Applications for the 2023 YARR Leadership Academy are now open! The YARR Leadership Academy is a series of online classes offered to a select group of advocates between 18 and 30 years old who are ready to be leaders in the rare disease community.YARR Leadership Academy students will learn about the roles and opportunities for patient representation in…

July 7, 2023 Today, the National Organization for Rare Disorders (NORD) and the APS Type 1 Foundation, a NORD member organization, announced the awarding of a $50,000 grant for research into this rare autoimmune disorder. The grant, which is part of NORD’s Jayne Holtzer Rare Disease Research Grants Program, was made possible by funding from…

In March 2023, we posted about a potential new therapy to treat hypoparathyroidism from Ascendis Pharma. Click here to read the earlier post. Today, we update you that the U.S. Food and Drug Administration did not approve TransCon™ PTH just yet, but all hope is not lost. While the FDA is requiring additional information about…

We know a lot of our patients and families have been impacted by the recall of NatPara in 2019 with many of you on the compassionate use program that is slated to close at the end of 2024.   Todd Talarico recently had the opportunity to speak to the Head of Patient Advocacy for Ascendis…

From February 13th through February 28th (Rare Disease Day), APS Type 1 patients, families, and supporters gathered virtually to participate in a 1000-mile walk. The purpose of the online “race” was to raise awareness of APS Type 1, build community, and fundraise for critical research and programming. The event also honored the memory of James…

Article: “This stem cell startup is designing a therapy to restore and boost immunity” Author: Ryan Cross Newspaper: Boston Globe March 1, 2023, 12:01 a.m. Click here for the link to the article Key quotes:  “(Dr.) Wang wants to use his company’s thymus cells as a therapy that helps people getting bone marrow or organ…

The EveryLife Foundation for Rare Diseases has established the #RAREis Scholarship Fund to help adults with rare diseases in a variety of educational pursuits, regardless of treatment status. Thanks to the support of Horizon Therapeutics plc, one-time awards of $5,000 each will be granted up to 70 recipients for the Fall 2023 semester. The program…

Most people associate trauma with distressing events such as a natural disaster, the sudden loss of a loved one, or an instance of violence, but trauma can also result from chronic illness, including primary immunodeficiency (PI)—and that trauma has an impact on mental health. “Typically, trauma is something that is happening outside of us, something…

Dear friends and families of the APS Type 1 Foundation:  On this Rare Disease Day, we are so moved by the enthusiasm with which you all have embraced our cause over the last few weeks. Together, we far exceeded our 1,000 mile goal for APS Type 1.  We’ve logged over 4300 miles, roughly the distance between Atlanta and…

***Thanks to you amazing racers, we are only $317 away from reaching $10,000 raised. Check your coats and jeans pockets for that forgotten five or twenty dollar bill and send it in!*** Since so many of us are new to the APS Type 1 Foundation, we want to take this opportunity to explain our work…

“A great soul serves everyone all the time. A great soul never dies. It brings us together again and again.” — Maya Angelou And so James Read has brought us all together on this journey, inspired by a too-short life that was nevertheless lived to the fullest. James was just 20 years old when he passed…

In honour of James Read’s life and in celebration of his birthday on December 27th, his friends in the UK walked 27 miles in one day. They had almost 30 people to start, meeting by the tree of life outside Lincoln Cathedral, where James was a chorister. Friends, family and teachers joined part way for…

Thank you for interest in the 2023 “Walk 1000 miles for APS Type 1” virtual trek. Who: Anyone in the APS Type 1 community and their supporters! One of the best features of our online race platform is that participants can log any type of activity. You can run, walk, bike, swim, dance, circuit train,…

Dr. Lionakis’ Lab and his team of dedicated healthcare providers at the National Institutes of Health in Bethesda, Maryland, have collaborated with the APS Type 1 community since 2012 with the goals of characterizing disease progression and developing new therapeutic approaches to improving the lives of persons with APS Type 1/APECED. Building on their research…

RADIOLAB.ORG RELEASES THYMUS PODCAST We invite you to listen to Radiolab’s new podcast entitled “My Thymus, Myself.”  As you may know,  APS Type 1 results from a mutation in the AIRE gene which determines self-tolerance by programming T cells to recognize self and not self.  This 2022 Radiolab podcast does a good job of explaining…

NIH LAUNCHES FIRST EVER THERAPEUTIC CLINICAL TRIAL IN APS TYPE 1 Dr. Lionakis’ Lab and his team of dedicated healthcare providers at the National Institutes of Health in Bethesda, Maryland, have collaborated with the APS Type 1 community since 2012 with the goals of characterizing disease progression and developing new therapeutic approaches to improving the…

Congratulations to the APS Type 1 (APECED) Registry community!  We’ve enrolled over 100 patients (106 to be exact) into our very own registry, The APS Type 1 (APECED) Registry.  We have big plans for 2023, including publishing an article using the patient data we’ve collected so far in collaboration with UCLA. We plan to curate…

As the aspirations and goals of our community grows, so too does our board.  We are excited to announce the expansion of our board of directors to include three new members: Dr. Pushpa Rao, Julia Richardson and Dr. Laura Rivard.  We are grateful for their support, collaboration and passion. Dr. Pushpa Rao is the proud…

Your generosity and support now will help make it possible for us to accomplish the following critical objectives in 2023: Host our 5th International Symposium in Washington, D.C. in July 2023 to bring patients, families and researchers together. Continue to build our global research network and fund critical research. Raise awareness and shorten the time for…

Affected Product: Device Description Part Number Serial Number Omnipod DASH® Personal Diabetes Manager (PDM) PDM-CAN-D001-MMSKT-CAN-D001-MM All serial numbers Dear Valued Customer, You are receiving this letter as our records indicate you are a current or past user of the Omnipod DASH® Insulin Management System. This notice is being communicated as a voluntary Field Safety Notification…

Register today and mark your calendar for Friday, October 21 and Saturday, October 22. It’s virtual and it’s free! Click here to register! Friday Lunch Keynote Speaker: Gigi Robinson Gigi Robinson will be a lunch keynote speaker. Gigi, a Gen Z social media influencer, was diagnosed with Ehlers Danlos Syndrome at age 11 and uses her chronic illness as fuel for her passion for advocacy. In her…

The APS Type 1 Foundation is reaching out to the APS Type 1 (APECED) patient community to raise awareness about an opportunity for patients to help advance research from home. What is the goal of the research? The goal of this study is to understand how APS Type 1 (APECED) works on a cellular level…

Thank you to the Lovett family and friends, the Holy Rosary CYO Program and Gordo’s North for their generous support of our foundation.  Their 2022 March Madness fundraiser in memory of Kaitlyn Lovett raised $1,775 in support of our mission to raise awareness about APS Type 1 and to help find a cure. The Holy…

NORD Announces over $100,000 in Grant Funding Available for Rare Disease Research Three RFPs Now Open for Qualified Researchers through NORD’s Jayne Holtzer Rare Disease Research Grants Program April 29, 2022, Washington, DC – Today, the National Organization for Rare Disorders (NORD®) announced three new requests for proposal (RFP) for grant funding related to the following…

The CDC now recommends a 4th vaccine dose to be given at least 12 weeks after the 3rd dose for mRNA vaccines in patients >12 years old with moderate or severe immunocompromise. No such recommendation is yet given by the CDC for <12-year-old individuals. Given that APS1 patients carry type I IFN autoantibodies and many are also on immunomodulatory medications that can…

We are looking forward to hosting an international meeting of doctors & scientists working on APS Type 1 in-person in Toronto from Oct 6 to Oct 7, 2022! Please spread the news to all medical experts (this meeting is only open to clinicians and scientists but we’re also planning for our public international symposium in…

Did You Hear The BIG News?On Monday, April 4, 2022, the U.S. House of Representatives passed the Ensuring Lasting Smiles Act (ELSA) with supermajority support! We are thrilled that our small-but-mighty bill has passed the U.S. House of Representatives and is one step closer to becoming a law. We wouldn’t be here without the grass-roots efforts of our advocates…

Somewhat serendipitously, before NORD announced that Dr. Lionakis was named a 2002 Rare Impact Award Honoree, we had planned to feature Dr. Lionakis and his work. We especially want to recognize him for all that he has done to advance the scientific community’s understanding of APS 1/APECED as well as for his kind and compassionate care…

This year’s Rare Disease Day was a resounding success! Thank you to many of you for participating with the Zebra-themed shirts and jean ribbons, for joining the virtual event and for various activities you have conducted to raise awareness on rare diseases.  If you missed the wonderful virtual event organized by our friends at NORD,…

Meet Ashley Harris, APS Type 1 mom and administrator of the Foundation’s Community Facebook page for friends and families with APS Type 1. “Originally from San Antonio, TX, and currently living in Washington, D.C., my husband, Dave, and I met at the University of Alabama (Roll Tide) and have been living an adventurous and chaotic military life…

NATPARA® Update Pharmaceutical company Takeda continues to work with the U.S. Food and Drug Administration (FDA) to bring NATPARA® back on the market.  Unfortunately, there is more work to do.   Click on the link below to read Takeda’s recent regulatory update.  According to the update, Takeda plans to continue providing NATPARA® to those enrolled in its…

Pursue Your Dreams through the #RAREis Scholarship Fund The #RAREis Scholarship Fund was established in 2020 to help young adults with rare diseases to pursue their dreams through education. Thanks to the support of the #RAREis program by Horizon Therapeutics, The EveryLife Foundation is pleased to announce its third year of the #RAREis Scholarship Fund, a scholarship dedicated to the…

We are delighted to publish the official rapporteur’s report from the 4th International Symposium on APS Type 1 written by Dr. Si Yue Guo! Please click on the button below to download the report. If you missed the symposium, you are also welcome to check out our video recordings using the links below as well….

In partnership with the IDF (Immune Deficiency Foundation), we are planning a regular virtual get-together for our patient community, so that we can connect with other families and medical professionals in the APS Type 1 field! The virtual platform via Zoom allows us to meet and ask questions, share tips, and bond together with community…

It is estimated that 30 million people in the United States, or 1 in 10, are living with a rare medical condition. Although understanding the experience of a person with a rare disease can enable improved health, faster and more accurate diagnosis, and better care for individuals and families living with rare diseases, medical professionals…

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…

The Food and Drug Administration announced an emergency use authorization (EUA) of antiviral treatments for mild-to-moderate coronavirus disease (Covid-19) on December 22 and 23rd. This wonderful news provides a useful new course of action for covid-19 infections, including breakthrough cases of omicron as well as the other variants. These antiviral treatments will eventually be for…