IDF hosted another twofer Saturday with Patient Education Meetings in St. Louis and Salt Lake City on December 10. This eventful Saturday featured the last two patient meetings before the New Year! IDF was in both places to educate the community about primary immunodeficiency diseases and provide networking opportunities for patients and family members. Each meeting featured local experts in immunology addressing the treatment and management of primary immunodeficiency diseases with presentations and question and answer periods.
Experts at the St. Louis meeting included Dr. Alan Knutsen of St. Louis University School of Medicine; Dr. Nick Debnath of Washington University School of Medicine; and Dr. Michael Borts of Allergy, Asthma, & Sinus Care Center. Fifty patients and family members were in attendance, many of whom had never before attended an IDF event. The experience was overwhelming positive for the participants. As one patient expressed, “This IDF meeting was very educational and significant to my wife and me. We look forward to future events in St. Louis.” USIDNet was also at hand to consent patients in St. Louis who wished to be a part of the USIDNet Patient Registry. The Registry is a database designed for the advancement of research for primary immunodeficiency diseases. Its success depends on patients and families who are willing to submit their medical information to be combined with thousands of others in order to establish this valuable data set.
The meeting in Salt Lake City was attended by 35 individuals, who were all very excited and engaged to be a part of the conversations. The wonderful trio of Dr. Adi Gundlapalli, Dr. John Bohnsack, and Dr. Karen Chen all of the University of Utah School of Medicine spoke to the group about PIDD and answered treatment questions. The patients were so hungry for information about PIDD that the Ask the medical Experts session went through lunch and the doctors continued answering questions until almost 1:30pm!
Both meetings featured person to person discussion session for patients and family members only. This afforded participants with the opportunity to speak one-on-one with others going through similar experiences and share support and resources.
Once again, it is important to note that none of these meetings would be possible without the help of our amazing volunteers. Thank you Karen Wheat, Tammy Allard, and Laura Sievert in Missouri and Jill Heaps in Utah! Your help is always appreciated.
Just because this is the last Patient Education meeting of the year, don’t think for a second that we don’t have a ton of wonderful events already in the works for next year! Keep checking back on the IDF Calendar of Events to find an upcoming meeting in your area.
To learn more about USIDNet and the USIDNet Patient Registry, please visit http://primaryimmune.org/patients-and-families/usidnet-patients
Have the Community in Action bug? Comment below or fill out the Contact form at the top of the page to have your story of volunteer activities featured in a future blog post. To learn more about ways you can get involved, please visit the website at www.primaryimmune.org