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…
Read MoreA Rare Disease Day Toolkit! >> Feb 28, 2022
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…
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Breaking Down Common Terms in the Immune Deficiency Space
As with any medical field, there are a number of terms in the immunodeficiency community that can quickly get confusing for new patients and their caregivers. A few examples: immunocompromised, immunosuppressed, primary immunodeficiency, secondary (or acquired) immunodeficiency, inborn errors of immunity. What do these terms mean? And how do they relate to each other? Defining…
Read MoreFDA APPROVES ANTIVIRAL PILLS TO TREAT COVID-19 AT HOME
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…
Read MoreThe NIH’s COVID-19 Treatment Guidelines Panel Issues Updated Statement on Therapies for High-Risk, Nonhospitalized Patients with Mild to Moderate COVID-19
On December 22 and 23, 2021, the Food and Drug Administration (FDA) issued Emergency Use Authorizations (EUAs) that allow 2 new oral antiviral agents to be used in this patient population: ritonavir-boosted nirmatrelvir (Paxlovid) and molnupiravir. The NIH’s COVID-19 Treatment Guidelines Panel issued an updated statement today to provide clinicians with guidance on the…
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Community Spotlight: The Zukosky Twins
By: Barbara Zukosky I am the mother of two amazing APSers, Sophie and Madeline. Sophie and Madeline are identical twins. Although they are identical twins, their journey has been similar but not the same. Their journey began when both girls developed fevers and a rash a few months before their first birthday. Their rash and…
Read MoreNIH (life) HACKS
By: David Seyfert life·hack/ˈlīfˌhak/ A life hack is any trick, shortcut, skill, or novelty method that increases productivity and efficiency, in all walks of life. Life hacks,are all about eliminating life’s manifold frustrations in simple and deliciously clever ways. The good news is that you’re going to the NIH, you will have access to the finest physicians, researchers,…
Read MoreFoodie With Flavor Gaby Shares Dairy-Free Creamy Mushroom Stroganoff Recipe
By: Gaby Talarico Dairy Sensitivity and Dairy Allergy Besides gluten, another common and major food allergy in the U.S. today is dairy sensitivity. There are actually two forms of dairy sensitivity that people could experience: lactose intolerance and dairy allergy. While lactose intolerance is associated with the digestive system, dairy allergy is associated with the…
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Marathoner Becca Raises over $10,000
Thank you for Becca Bednarz who ran for rare in NYC and raised over $10,000 for the Foundation’s restricted research grant. Hear more from Becca in her own words. One of the first things I learned about four-year-old Gaby Talarico was that she loved imaginary games. I was five when we met, and at the…
Read MoreThe APS Type 1 Foundation Wins $50,000 Grant and Retains The Park Group
We are thrilled to announce that the APS Type 1 Foundation has won a $50,000 grant for general operating support from the Chan Zuckerberg Donor Advised Fund (DAF), through the Silicon Valley Community Foundation (SVCF). This grant is a game-changer for our Foundation and we owe special thanks to our Medical Advisory Committee for their…
Read MoreThe FDA Authorizes Evusheld, a COVID Pre-Exposure Prophylaxis in Certain Individuals
On December 8, 2021, the U.S. Food and Drug Administration issued emergency use authorization for tixagevimab/cilgavimab, known as EvusheldTM. This is a long-acting monoclonal antibody combination against SARS-CoV-2 given every 6 months as pre-exposure prophylaxis for people who are high risk and do not mount an antibody response to COVID vaccine or cannot get any COVID vaccine…
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