About a month ago, from June 23-26, The Immune Deficiency Foundation hosted the 2021 Primary Immunodeficiency Conference. The event was the largest gathering of primary immunodeficiency (PI) patients across the globe, bringing together more than 1,500 attendees.
About the Conference
The 1,500 patients represented 49 different countries, all of whom were able to participate in the virtual conference. None of these people were charged for the event, and many sessions were also offered in Spanish. More than 20 exhibitors were present at the event, discussing topics like research, lifestyle management, treatment options, and more.
The IDF’s goal is to bring patients together, helping them to learn, connect, and network. To do so, they presented a number of sessions:
- Health Equity Panel Discussion
- discussion of how to help PI patients within underserved populations and raise awareness
- Understanding Gene Therapy
- from Dr. Manish Butte
- The Public Face of PI Panel Discussion
- from patients and parents
- COVID-19: Immunity Within Reach
- from Dr. Kathleen Sullivan
- Plasma Ethics Panel Discussion
- from the leaders from the field
Beyond educational experiences, the IDF wants patients to feel a sense of community at their conference. In order to accomplish this, they set up peer connection groups, organized small discussions, and offered fun activities. Participants could watch the performance of a mind reader or magician and take part in an escape room, among other activities.
Awards are a staple of the conference, as the IDF wants to recognize those who have contributed to the PI community in regard to research and advocacy. This year, three awards were handed out.
Dr. Kathleen Sullivan of the Children’s Hospital of Philadelphia (CHOP) received the Community Hero award for her dedication to the PI community over the course of the pandemic. Duke University’s School of Medicine’s Dr. Louise Markert was awarded the IDF Scientific Achievement Award for both the work she does for PI patients and her contributions to diagnosing and treating congenital athymia. Lastly, the Plasma Hero award went to Sonya Williams. She is the Senior Manager of Marketing and Community Relations for CSL Plasma and was recognized for the 30 years she has put in to raise awareness for plasma donation.
About Primary Immunodeficiency
Primary immunodeficiency (PI) disorders are a group of inherited disorders of the immune system. Affected individuals do not have properly functioning immune systems, leaving them extremely susceptible to infections. The type of PI impacts what kind of infections one is prone to. A few common forms include common variable immunodeficiency disease, severe combined immunodeficiency, and chronic granulomatous disease. These conditions are the result of genetic mutations, the majority of which are inherited from parents. However, sporadic mutations can cause PI disorders as well. In terms of treatment, there is no cure. A treatment plan should be tailored to each individual patient based on their case.
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