If you are treating someone with APS Type 1, thank you for your commitment to helping your patient and our community. We’re a small, but mighty group.
Together, we can pool our resources to make a significant and positive impact on patient care. Here are just a few ways.
We love to meet new families and introduce them to our community. Just knowing someone else is out there who is going through the same experiences is an invaluable resource to our patients and families.
Please connect the family to the APS Type 1 Foundation and encourage them to participate in the APS Type 1/APECED Registry.
Many of our patients are participants in Dr. Lionakis’ NIH study entitled “The Natural History, Immunologic Correlates and Genetic Defects in Patients With Mucocutaneous and Invasive Fungal Infections.” Dr. Lionakis and his dedicated team of multi-specialty researchers have been incredible resources not only for patients, but also for their local treating physicians. We are happy to make any introductions we can.
The NIH recommends regular surveillance for existing and potential disease manifestations. See the NIH’s Yearly Laboratory Work-Up for APECED Patients.
Orphanet published guidance on pre-hospital treatment recommendations and hospital emergency department treatment recommendations primarily for hypocalcemia and adrenal crises. Read their recommendations. Orphanet is a unique resource, gathering and improving knowledge on rare diseases so as to improve the diagnosis, care and treatment of patients with rare diseases. Orphanet was established in France by the INSERM (French National Institute for Health and Medical Research) in 1997.
Explore Research Articles
We’ve curated dozens of APS Type 1 related research articles from the many hundreds of articles in publication.