Jocelyn Cooper (Program manager, Black Women's Health Imperative) and Holly Jones (Executive director, HERstory In Color) give a presentation on caregiving and chronic illness. The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors. --------------------------------------------------------------------------------------------------- Inequities in the rare disease community: https://21259597.fs1.hubspotuserconte... RDDC Patient & caregiver advisory board interest form: https://docs.google.com/forms/d/e/1FA... HERStory in Color: https://herstoryincolor.org/ IDF Caregiver compassion & connection guide: https://primaryimmune.org/resources/p... RDDC: https://www.rarediseasediversity.org/

TRANSCRIPT: https://primaryimmune.org/sites/default/files/TRANSCRIPT%20Foundation%20Focus%20September%202025.pdf Immune Deficiency Foundation CEO Jorey Berry provides updates to the community for the month of September. Topics include Walk for PI, upcoming webinar events, the 2024 annual report, and the film Compromised: Life without immunity.

**This conversation includes the topics of suicidal and self-harm ideation. We understand that not everyone is capable of hearing such conversations. Listener discretion is advised.** TRANSCRIPT: https://primaryimmune.org/sites/default/files/TRANSCRIPT%20-%20CX20%20Mental%20health%20and%20college%20roundtable%20.pdf On this throwback episode of ChronicxTwenties, we revisit a roundtable from December 2023. Cassie Mummert, Darcy Gott, Ethan McGrew, Jesse McCall, Lance McCall, and Victoria Medl discuss how they navigate the stress of college, postgraduate studies, and mental wellness with primary immunodeficiency. In memory of Ethan McGrew. The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.

Transcript: file:///E:/2025/Podcasts/CEO%20Updates/Transcript%20-%20FF%20Aug%202025.pdf CEO Jorey Berry provides an update for the month of August 2025. Topics include Walk for PI, resources for a new school year, and the 2026 National PI Conference.

Transcript: https://primaryimmune.org/sites/default/files/TRANSCRIPT%20-%20HLH.pdf Dr. Michael Jordan of Cincinnati Children's provides an overview of hemophagocytic lymphohistiocytosis (HLH). View a PDF of this presentation: https://primaryimmune.org/sites/default/files/v2%20FOR%20WEB%20HLH.pdf To learn more, volunteer, or donate, visit primaryimmune.org/donate. The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.

Dionne Stalling's 45-year diagnosis journey started with a mosquito bite. Her quest for answers took her through some of the unflinching truths of the healthcare system. This is her story. You can hear more of Dionne's story in the Immune Deficiency Foundation's new documentary, "Compromised: Life without immunity." Visit primaryimmune.org/compromised to register. The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.

President and CEO Jorey Berry provides an update for the month of July. Topics include new programming, Walk for PI, new resources, and our organization's statement regarding the passage of H.R.1 (OBBBA). *This message was recorded prior to the incredible show of support by Ironmouse and her community.*

Transcript: https://primaryimmune.org/sites/default/files/TRANSCRIPT%20Bold%20Conversations%20-%20Misinformation.pdf Cynthia Baur, PhD, is a health literacy and health communication expert focused on improving health literacy at the individual, family, community and organizational levels. She directs the University of Maryland Horowitz Center for Health Literacy, the nation's first academic health literacy center, and is a professor in the Department of Behavioral and Community Health. She joins Dr. Nicole for a conversation about misinformation, disinformation, what we've learned about combatting them. https://sph.umd.edu/research-impact/research-centers/horowitz-center-health-literacy To donate, volunteer, or learn more about primary immunodeficiency, visit www.primaryimmune.org.

Transcript: https://primaryimmune.org/sites/default/files/TRANSCRIPT%20Chronic%20Twenties%20Advocacy.pdf Immune Deficiency Foundation staff members Rebecca Russ (grassroots advocacy specialist) and Eric Feigen (regulatory affairs manager) provide insight on what advocacy is, its role in the greater PI community, and the power of young voices. Sign up for IDF action alerts to make your voice heard in just a few clicks! https://primaryimmune.org/get-involved/advocate/action-alerts

This program is presented with support from CSL Behring, Takeda, and Grifols. Read a transcript of this episode: file:///E:/2025/Podcasts/CEO%20Updates/Transcript%20-%20CEO%20Update%20June%2025.pdf Immune Deficiency Foundation CEO Jorey Berry discusses our new text message program, an upcoming Lunch & Learn, and an exciting new volunteer opportunity.

Transcript: https://primaryimmune.org/sites/default/files/APDS%20Lunch%20and%20Learn%20transcript.pdf Dr. Jolan Walter (University of South Florida, Johns Hopkins All Children's Hospital) provides an explanation of genetic variants in APDS. View a PDF of this presentation: https://primaryimmune.org/sites/default/files/FOR%20WEB%20APDS%20IDF%20Lunch%20and%20Learn_jw_toshare.pdf

Transcript: https://primaryimmune.org/sites/default/files/Transcript%20-%20May%20CEO%20Update.pdf Immune Deficiency Foundation CEO Jorey Berry provides an update for the month of May, 2025.

Transcript: https://primaryimmune.org/sites/default/files/Transcript%20Shaker.pdf Dr. Marcus Shaker is a professor of pediatrics in medicine at Dartmouth's Geisel School of Medicine. On this episode of the Immune Deficiency Foundation podcast, he joined staff members Angie Kotarski, community resource navigator, and Stephanie Steele, director of payor relations and policy to discuss prevalent issues surrounding insurance coverage for primary immunodeficiency patients. To donate, volunteer, or learn more about PI and the Immune Deficiency Foundation visit primaryimmune.org. The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.

Transcript: https://primaryimmune.org/sites/default/files/April%20CEO%20Transcript.pdf Immune Deficiency Foundation president and CEO Jorey Berry provides updates to the PI community.

Transcript: https://primaryimmune.org/sites/default/files/Advocacy%20Day%20Training%20Transcript.pdf This week, 150 advocates will represent the Immune Deficiency Foundation and the greater PI community on Capitol Hill in Washington, D.C. But what does that mean, exactly? Why is it important? And what are these volunteers responsible for? This episode of the Immune Deficiency Foundation podcast will give a special look behind the curtain to those interested in, but intimidated by, advocacy work on behalf of the PI community.

Transcript: https://primaryimmune.org/sites/default/files/TRANSCRIPT%20Legislative%20webinar.pdf This panel discussion features Immune Deficiency Foundation CEO Jorey Berry, as well as Chief Public Policy Officer Lynn Albizo, Community Resource Navigator Angie Kotarski, and Jodi Taub, owner of Jodi Taub Therapy, discuss the impact of recent federal policy changes on the PI community. The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors. LINKS: https://primaryimmune.org/get-involve... www.medicare.gov www.medicaid.gov www.healthcare.gov www.usa.gov/state-health www.naccho.org/membership/lhd-directory https://www.kff.org/ www.commonwealthfund.org www.accessiahealth.org www.patientadvocate.org www.triagehealth.org www.rarediseasediversity.org/rddc-get-involved www.patientsrising.org www.rarediseases.org/get-involved/

https://primaryimmune.org/sites/default/files/Bold%20Conversations%203.2%20Transcript.pdf In this session from the 2024 PI Conference in Chicago, Dr. Nicole gave a very vulnerable talk about her experiences navigating the healthcare system, both as a physician and as a caregiver for her father. To learn more, volunteer, or donate, visit primaryimmune.org/donate. The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.

Transcript: https://primaryimmune.org/sites/default/files/01PROOF%20transcription%20gene%20editing%20webinar.pdf View a PDF of this presentation: https://primaryimmune.org/sites/default/files/FOR%20WEB%20-%20Gene%20editing.pdf Susan Prockop, MD​ of Boston Children's Hospital and Harvard Medical School provides an overview and recent updates to gene therapy research for primary immunodeficiency. To learn more, volunteer, or donate, visit primaryimmune.org/donate. The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors. LINKS: SCID-X1 Gene Therapy Via Intravenous Lentiviral (Ivlv-X1) Injection: https://clinicaltrials.gov/study/NCT03217617?term=NCT03217617&rank=1 Phase I/II Trial of Lentiviral Gene Transfer for SCID-X1 with Low Dose Targeted Busulfan Conditioning: https://clinicaltrials.gov/study/NCT03311503?term=NCT03311503&rank=1 Lentiviral Gene Transfer for Treatment of Children Older Than Two Years of Age With X-Linked Severe Combined Immunodeficiency (XSCID): https://clinicaltrials.gov/study/NCT01306019?term=NCT01306019&rank=1 Pilot and Feasibility Study of Hematopoietic Stem Cell Gene Transfer for the Wiskott-Aldrich Syndrome: https://clinicaltrials.gov/study/NCT01410825?term=NCT01410825&rank=1 Gene Therapy for WAS: https://clinicaltrials.gov/study/NCT01347346?term=NCT01347346&limit=10&rank=1 Gene Therapy for Wiskott-Aldrich Syndrome (WAS): https://clinicaltrials.gov/study/NCT01347242?term=NCT01347242&limit=10&rank=1 Study of Gene Therapy Using a Lentiviral Vector to Treat X-linked Chronic Granulomatous Disease: https://clinicaltrials.gov/study/NCT02234934?term=NCT02234934&limit=10&rank=1 Gene Therapy for X-linked Chronic Granulomatous Disease (X-CGD) (CGD): https://clinicaltrials.gov/study/NCT01855685?term=NCT01855685&limit=10&rank=1 pCCLCHIM-p47 (Lentiviral Vector Transduced CD34 Plus Cells) in Patients With p47 Autosomal Recessive Chronic Granulomatous Disease (AR-CGD): https://clinicaltrials.gov/study/NCT06253507?term=NCT06253507&limit=10&rank=1 Lentiviral Gene Therapy for p47 AR-CGD: https://clinicaltrials.gov/study/NCT05207657?term=NCT05207657&limit=10&rank=1 Base Editing for Mutation Repair in Hematopoietic Stem & Progenitor Cells for X-Linked Chronic Granulomatous Disease: https://clinicaltrials.gov/study/NCT06325709?term=NCT06325709&limit=10&rank=1 A Study of the Safety and Efficacy of Prime Editing (PM359) in Participants with P47phox Autosomal Recessive Chronic Granulomatous Disease (CGD): https://clinicaltrials.gov/study/NCT06559176?term=NCT06559176&limit=10&rank=1

Immune Deficiency Foundation CEO Jorey Berry provides an overview of updates for the community in March 2025.

Transcript: https://primaryimmune.org/sites/default/files/FOR%20WEB%20Undiagnosed%20Ilana%20Transcript.pdf TikTok personality and author of "Medical Gaslighting" Ilana Jacqueline has captivates her curious followers with tips on navigating a hostile medical system. Unfortunately, her lessons are often things she's learned the hard way. Medical gaslighting: https://www.amazon.com/Medical-Gaslighting-Deserve-System-Makes/dp/1637745397/ref=sr_1_1?crid=FROEQYELD5A2&dib=eyJ2IjoiMSJ9.M8ujTsCfx7OiEXXjoBlASPHIHCak2xLFGUqPz0W4cT8mG8uwVYRda1tkP7HakgUxdEFnScIS0cB26F31dbVvO0h7ZgT4JYSRGjXu748gyAbLvQDLWS9GCeaqcq9WdTDY7tvBVHkiZByaOIKRKwxnj4_EPRzINv_YcaZlbb1iag998ueBekHfgt-gWTEvFygODrVHfYIHN3Bs_k5MwmTUJazTX7PWa59EQABi8lESigA.OGwcZUHvLJsR2wvT-fVsYULlFTgqnjYnpXEPbw37A-A&dib_tag=se&keywords=medical+gaslighting&qid=1743001146&sprefix=medical+gaslighting%2Caps%2C114&sr=8-1 Follow Ilana on TikTok: https://www.tiktok.com/@ilana_jacqueline The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors. Support for the Immune Deficiency Foundation programs for undiagnosed and underserved populations is provided by CSL Behring, CVS Specialty Pharmacy, Grifols, Pharming, and Merck & Co.