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IDF Patient Meeting Gets a Touch of Southern Charm and Hospitality


IDF Program Specialist/ Field Rep Colin Seal with South Carolina Volunteer Xan Moseley

The IDF Patient Education Meeting in Charleston, SC August 6th was a wonderful event for patients and family members!  Twenty-five individuals attended the meeting at the Hilton Garden Inn to learn more about primary immunodeficiency diseases and meet with others who live with these diseases.   Special thanks and gratitude go to Xan Moseley, IDF’s amazing volunteer from Charleston, who put so much effort into making the meeting a triumph!

The meeting featured local experts in immunology addressing the treatment and management of primary immunodeficiency diseases with presentations and question and answer periods.  Speakers and topics included:


Dr. Gerber presenting

Welcome & IDF Update
Colin Seal, IDF Field Representative & Program Specialist
Overview of Primary Immunodeficiency
Patricia Gerber, MD - National Allergy, Asthma, and Urticaria Centers of Charleston, P.A.
Immunoglobulin Therapy
Barbara E. Magera, MD - Asthma, Allergy and Immunology Clinics, LLC, Charleston, SC
Ask the Medical Expert
Patricia Gerber, MD - National Allergy, Asthma, and Urticaria Centers of Charleston, P.A.
Barbara E. Magera, MD - Asthma, Allergy and Immunology Clinics, LLC, Charleston, SC

In addition to the fabulous speakers, the attendees also enjoyed a person to person discussion session for patients and family members only and the opportunity to join 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.  Lamar Hamilton, USIDNet Project/Study Coordinator was on hand to consent patients who were interested in joining the registry.  All 25 patients opted to join and help this database grow!  After the Patient Meeting, the attendees also had the opportunity to visit the local CSL Plasma Center to see where the plasma for IG therapy products are collected and thank the donors.  For many it was the first time visiting a center and provided a wonderful eye opening experience.


Group visiting the plasma center

Share in the knowledge and connections that IDF Patient Education Meetings offer!  Join us at an upcoming 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

Please let IDF know if you are involved in any Community in Action activities in your community. Comment below or fill out the Contact form at the top of the page to have your story featured in a future blog post.  To learn more about ways you can get involved, please visit the website at www.primaryimmune.org .

 

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