What do the City of Brotherly Love and sunny Los Angeles County have in common? No, not that Will Smith owns houses in both locations. Philadelphia and Cerritos, CA were both hosts to IDF Patient Education Meetings on Saturday, December 3, 2011! This busy Saturday saw IDF 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 Cerritos meeting included Dr. Joseph Church, Children’s Hospital of Los Angeles; Dr. Sudhir Gupta, University of California, Irvine; and Dr. E. Richard Stiehm and Dr. Marc Riedl, University of California, Los Angeles. One hundred patients and family members were in attendance, most of whom had never before attended an IDF event. The experience was overwhelming positive for the participants. As one patient expressed, “Thank you, thank you, thank you, IDF! Your support makes a HUGE difference in many ways. The information/education, advocacy, patient networking are an invaluable gift to patients.”
The meeting in Philadelphia was attended by 65 individuals, many of whom came from surrounding New Jersey and Delaware to hear the expert presentations. The wonderful trio of Dr. Stephen McGeady of Thomas Jefferson University, Dr. Kathleen Sullivan of Children’s Hospital of Philadelphia, and Dr. David LaRosa of the University of Pennsylvania spoke to the group about PIDD and answered treatment questions. USIDNet was at hand to consent patients in Philadelpia 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.
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 Kristy Cacucciolo, Nancy Hoffman, Mary Hurley, Richard Low, and Shirley Vulpe in California and Mandy Davis, Terry Halper, and Judy Kozulak in Pennsylvania! Your help is always appreciated.
Please join us at an IDF Patient Education Meeting or other great IDF event in your area! Check out the IDF Calendar of Events for details.
To learn more about USIDNet and the USIDNet Patient Registry, please visit http://primaryimmune.org/patients-and-families/usidnet-patients
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