By Abbie Cornett
This week, I have the privilege of attending my first Immune Deficiency Foundation (IDF) National Conference in New Orleans from Thursday, June 25, through Saturday, June 27. In 2004, when I was diagnosed with common variable immunodeficiency (CVID), my immunologist, Dr. Roger Kobayashi, told me about IDF and the wonderful work it does.
IDF was founded in 1980 to help patients with primary immune deficiency diseases (PI), a group of more than 250 disorders that affect the immune system. Its mission is to help patients with immune deficiencies and their families gain access to care through its dedication to improving diagnosis, education and advocacy.
Shortly after my initial introduction to IDF, I was fortunate to attend one of its Capitol Hill days in Washington D.C., and I was able to see firsthand how important its work is for patients and their loved ones. Since then, I have also been able to attend regional meetings, where I was able to meet physicians from my area that specialize in patients who have immune deficiencies and related conditions. At these local meetings, I was able to attend educational sessions to learn more about my disease and meet other patients with whom I could share my experiences.
It is because of these wonderful experiences with IDF that I am so excited to be attending the National Conference for the first time. I am looking forward to meeting patients from all over the country and to be able to attend educational sessions with nationally recognized experts on immune deficiencies. As the patient advocate for IG Living magazine and a patient with CVID, I will be attending sessions that will help me answer patient’s questions regarding their conditions and reimbursement issues, and that will help me to establish relationships with physicians and other caregivers.
The National Conference offers patients and their families a chance to create a schedule of events that will fit their interests and their physical limitations by offering multiple sessions and activities. A number of the sessions will be repeated, so if a person can’t attend one, they will be able to attend it later. Besides educational opportunities, this conference is a wonderful venue for patients to meet and share their stories in a social setting. It starts with a welcome reception Thursday night at which attendees will be able to meet the presenters, IDF staff and sponsors of the event. The events continue on Friday evening with the IDF Zebra Gala that includes a silent auction. On Saturday evening, the event concludes with a night of fun at Mardi Gras World.
While the National Conference happens only once every other year, it is important to remember that IDF is there every day for patients and families of those with PIs. I want to thank IDF for everything it does for us.
Please share your experiences with IDF.