IDF Channel

For those living with rare diseases, such as PI, it is important to have a strong voice in state government and advise policymakers on critical issues related to access, coverage, and the diseases themselves. Many state policymakers are unaware of the challenges the rare disease community faces. To help bridge these gaps in knowledge, Rare Disease Advisory Councils or RDACs are created. RDACs serve as an advising body and liaison between the rare disease community and state governments.

According to the Bureau of Labor Statistics, employment in science, technology, engineering, math fields (otherwise known as STEM), is projected to grow twice as fast in the next decade as for all occupations. Even so, a recent Pew Center study reported that only 7% of recent graduates in STEM fields were Black students. In today's episode, we will be talking with two experts, Dr. Nicole Rochester and Alexis Mobley, to help us gain a better understanding of how to address these concerns and why it matters.

Chronic Granulomatous Disease or CGD, one of the rare forms of primary immunodeficiency, causes an increased susceptibility to infections caused by certain bacteria and fungi. In today’s diagnosis-specific episode, we will be exploring treatment options, particularly Bone Marrow Transplant, or BMT for CGD with Felicia Morton and Dr. Vinod Prasad.

The Immune Deficiency Foundation would like to thank our entire PI community for a wonderful 2021. Let's make 2022 an even stronger year! Have a happy and healthy holiday season!

Dr. Nicole Rochester, IDF's Consulting Advisor on Health Equity shares important questions to ask your physician that will help you advocate for you and your loved ones.

IDF's Rare of the Rare session, "WHIM Education Session" was presented by Jolan Walter, MD, Ph.D. on October 1, 2021.

IDF's Rare of the Rare session, "WAS Education Session" was presented by Donald Kohn, MD, Matthew Porteus, MD, Ph.D., and Fabio Candotti, MD on October 1, 2021.

IDF's Rare of the Rare session, "Ultra-rare: The Path Forward" was presented by Eveline Wu, MD, MSCR, Mary Hintermeyer, APNP, and Jodi Taub, LCSW on October 2, 2021.

IDF's Rare of the Rare session, "The Various HIGE Syndromes Education Session" was presented by Joshua Milner, MD on October 1, 2021.

IDF's Rare of the Rare session, "Precision Medicine Targeted Therapy for Primary Immunodeficiency: Where Are We Now?" was presented by Jennifer Leiding, MD, Lisa Forbes Satter, MD, and Caroline Kuo, MD on October 1, 2021.