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Posted on 9. July 2015

A Look Back at the IDF National Conference

By Abbie Cornett

A Look Back at the IDF National Conference

While I hadn’t really known what to expect from my first Immune Deficiency Foundation (IDF) National Conference, I can honestly say that it lived up to my expectations and more!

On the first night of the conference, patients and their families had the opportunity to meet other patients, IDF staff, board members and volunteers, as well as industry sponsors at an opening reception. The first thing that struck me was the number of people; the room was packed. As a patient with common variable immunodeficiency (CVID), I was for once surrounded by people who understood what it meant to be a zebra. I could talk freely to another person about my disease without having to give him or her a lesson in immune deficiency 101.

The next two days started with a breakfast symposium. The first day’s symposium focused on the new discoveries and future treatments for immune deficiencies, followed by an update from the founder of IDF, Marcia Boyle. On day two, the symposium revealed some interesting data collected from IDF’s annual insurance surveys, followed by a presentation about how patients can get information about insurance plans that will help them get the care they need. Afterward, attendees could attend individual breakout sessions on specific topics of interest that were varied and covered a number of immune diseases and related topics. Sessions were repeated at different times to allow patients and family members to make up ones they missed.

Even though I have been a patient for a number of years, I attended a session on CVID presented by Drs. Charlotte Cunningham and Marc Riedl. I was amazed at the quality of the presentation and the amount of new information I learned. This level of quality was not unique; every session I attended was well-organized and provided me with good information about a wide range of topics. In addition to educational sessions, PI Connect was a big part of the IDF conference. PI Connect is an online research forum where members can directly see research questions, pose their own questions and offer their input. It offers researchers and patients an opportunity to work together to find solutions to complex health issues.

Second only to the educational opportunities were the social activities. The second night of the conference was a gala awards dinner and silent auction. The awards honored people whose dedication to the immune patient community has been outstanding. These included:

  • The Boyle Scientific Achievement: Dr. William Shearer
  • The IDF Nursing Award: Deb Sedlak
  • The IDF Impact Award: The American Legion Child Welfare Foundation
  • The IDF Visionary Leadership Award: Dr. Rebecca Buckley and John Boyle

By the end of the conference, I had only one thing to say: Thank you IDF and Marcia Boyle for the wonderful experiences you provided me and hundreds of other patients to meet one another and share our experiences, while providing us the opportunity to learn more about our diseases and the barriers to care that we face.

I’d love to hear from others about your experiences at the IDF National Conference.

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