The more you understand about primary immunodeficiency (PI), the better you can live with the disease or support others in your life with PI. Learn more about PI, including the various diagnoses and treatment options.
Living with primary immunodeficiency (PI) can be challenging, but you’re not alone—many people with PI lead full and active lives. With the right support and resources, you can, too.
Be a hero for those with PI. Change lives by promoting primary immunodeficiency (PI) awareness and taking action in your community through advocacy, donating, volunteering, or fundraising.
Whether you’re a clinician, researcher, or an individual with primary immunodeficiency (PI), IDF has resources to help you advance the field. Get details on surveys, grants, and clinical trials.
Increased global demand combined with a drop in donations during the COVID-19 pandemic has raised alarm bells for many who rely on plasma-derived therapies. In response, The Immune Deficiency Foundation has created PlasmaHero (www.plasmahero.org), an initiative designed to educate the general public on the critical need for plasma and to connect potential donors with resources to get started. The website consists of a donation center locator as well as practical information on what it’s like to donate along with guidelines and tips for first-time donors.
The name ‘Plasma Hero’ was derived from the sense of overwhelming gratitude patients who rely on plasma-based therapies feel towards donors. Patients and their families view donors as true lifesavers and heroes. The new campaign and website offer a platform for plasma donors to be recognized and share their motivations for donating and the emotions they associate with this heroic act. The site will also offer updated information and resources for people who rely on plasma-based therapies.
Plasma Hero was conceived and created by the Immune Deficiency Foundation, a patient advocacy organization for those affected by primary immunodeficiencies (PI). Plasma-based therapies are used to treat a variety of chronic diseases, including PI. Individuals with blood clotting disorders, certain cancers, and lung disease also count on plasma for survival. It is often used in hospitals to treat trauma, burn, and shock patients. Because of plasma’s vast therapeutic uses, the global demand for plasma has been consistently increasing over the past several years.
In early March, plasma collection centers had to alter their operations to accommodate social distancing and safety protocols for plasma donors and center staff. A small number even closed temporarily. Once centers began to operate at a wider capacity, many donors were still hesitant to donate during a pandemic. This had a significant effect on plasma donation. Because it takes about nine months to manufacture plasma-based therapies from raw plasma, the decrease in donations that followed the onset of the COVID-19 pandemic will likely affect therapy availability starting around the end of the year. This disruption could be devastating to those who rely on plasma-derived therapies.
One other goal of this project is to clarify the difference between whole blood, source plasma, and convalescent plasma. “We hear about convalescent plasma daily in light of potential therapies for COVID-19. People who never donated plasma before are stepping up to make donations. While there’s a vast difference between source plasma and convalescent plasma, both have life-saving potential and our hope is that this raised awareness will help us all better understand the need for source plasma, which is critical to our community” states John G. Boyle, President & CEO of the Immune Deficiency Foundation.
Boyle continues, “Plasma donation is a heroic act and our hope is to inspire many, many more people to step up and make a difference in the lives of the wide variety of patients who rely on plasma-based therapies. The good news is new plasma donation centers are opening across the United States every month, making it even more convenient to make a donation and make a difference.”
PlasmaHero will be regularly updated with important information for donors and patients as well as recent features on new and recurring Plasma Heroes who are saving lives with the selfless act of donating plasma.
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The Immune Deficiency Foundation improves the diagnosis, treatment, and quality of life for every person affected by primary immunodeficiency.
We foster a community that is connected, engaged, and empowered through advocacy, education, and research.
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