Best Immune Deficiency Foundation Podcasts (2025)

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Living well with PI: Caregiving for chronic illness 1:24:56

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20h ago1:24:56

1:24:56

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.-------------------…

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Bridging The Gap Between Major Gifts & P2P Fundraising with Sinai Health Foundation's Jamie Lamont 29:48

15h ago29:48

29:48

While many healthcare organizations treat major gifts and peer-to-peer as separate fundraising channels, some forward-thinking institutions are discovering the power of integration. When these strategies work in harmony rather than competition, both programs can amplify each other's success and create deeper donor relationships. In this episode, Ma…

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Foundation Focus | September 2025 3:10

8d ago3:10

3:10

TRANSCRIPT: https://primaryimmune.org/sites/default/files/TRANSCRIPT%20Foundation%20Focus%20September%202025.pdfImmune 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.…

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Evolving Your P2P Strategy Alongside Your Community with Cystic Fibrosis Foundation's Robin Paterson 25:39

15d ago25:39

25:39

When life-saving treatments transform a terminal diagnosis into a chronic condition, everything changes — including how communities fundraise. The peer-to-peer landscape isn't just evolving with technology and trends; it's being reshaped by the very success of the causes we support. In this episode, Marcie Maxwell talks with Robin Paterson, Senior …

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ChronicXTwenties: College and mental health roundtable 47:57

16d ago47:57

47:57

**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.pdfOn this throwback episode of Chron…

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Setting Your Teams Up For Success with Dolphins Cancer Challenge’s Javier Sanchez 33:39

29d ago33:39

33:39

Leading a P2P campaign means managing multiple moving pieces—fundraisers with different experience levels, corporate partners with varying expectations and internal staff with diverse skill sets. But the most successful leaders know that underneath all this complexity lies a simple truth: understanding what drives each person is the key to keeping …

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Foundation Focus | August 2025 2:31

1M ago2:31

2:31

Transcript: file:///E:/2025/Podcasts/CEO%20Updates/Transcript%20-%20FF%20Aug%202025.pdfCEO 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.By Immune Deficiency Foundation

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Lunch and Learn: HLH with Dr. Michael Jordan 56:36

2M ago56:36

56:36

Transcript: https://primaryimmune.org/sites/default/files/TRANSCRIPT%20-%20HLH.pdfDr. 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.pdfTo learn more, volunteer, or donate, visit primaryimmune…

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Undiagnosed: The wounds that won't close 11:15

2M ago11:15

11:15

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/compromis…

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Foundation Focus | July 2025 3:43

2M ago3:43

3:43

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.*…

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Bold Conversations: Misinformation with Dr. Cynthia Baur 39:45

3M ago39:45

39:45

Transcript: https://primaryimmune.org/sites/default/files/TRANSCRIPT%20Bold%20Conversations%20-%20Misinformation.pdfCynthia 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 He…

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Deploying P2P Strategies For Emergency Response with American Red Cross' Jessi Woomer 31:03

3M ago31:03

31:03

Crisis fundraising operates on a different timeline than traditional campaigns. When disaster hits, organizations have a critical 24-hour window to mobilize resources and activate their networks. But what separates organizations that thrive in crisis from those that scramble? The difference lies in preparation—having systems, messages, and communit…

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ChronicXTwenties: Demystifying advocacy 34:29

3M ago34:29

34:29

Transcript: https://primaryimmune.org/sites/default/files/TRANSCRIPT%20Chronic%20Twenties%20Advocacy.pdfImmune 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…

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Embracing A Builder's Mindset with Parkinson's Foundation's Kayln Henkel 33:24

3M ago33:24

33:24

There's a fundamental difference between inheriting a well-oiled P2P machine and building one from scratch. When you're tasked with creating systems, culture and infrastructure that need to scale alongside explosive organizational growth, you're not just managing programs - you're architecting the future. But here's what most people don't realize: …

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Foundation Focus: June 2025 update with CEO Jorey Berry 2:55

3M ago2:55

2:55

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.pdfImmune Deficiency Foundation CEO Jorey Berry discusses our new text message program, an upcoming Lunch & Learn, and an exciting new volunteer opportunity.…

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Aligning Marketing And Field Teams For P2P Success with Wounded Warrior Project's Brandi Glover 30:07

4M ago30:07

30:07

In P2P fundraising, there can often be a disconnect between the excitement marketing generates and the direct recruitment strategies implemented by local field teams. The result? Frustrated participants, overwhelmed staff and missed opportunities to achieve participation goals and build lasting relationships with supporters. But what if marketing a…

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Lunch & Learn: Understanding genetic variants in APDS 45:16

4M ago45:16

45:16

Transcript: https://primaryimmune.org/sites/default/files/APDS%20Lunch%20and%20Learn%20transcript.pdfDr. 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%2…

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Growing Your “Share Of Community” Through P2P with AIDS Foundation Chicago’s Jonathan Harris & Christina Robinson 31:10

4M ago31:10

31:10

Marketers love to throw around terms like “share of voice” and “share of wallet” - ways to track how much attention or spending a brand commands. But in peer-to-peer fundraising, there’s a different kind of share that matters more. Growing your “share of community” is about going deeper with the people closest to your cause - the ones who feel seen…

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Jorey's monthly wrap-up: May 2025 3:29

4M ago3:29

3:29

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

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Activating The Content Creator Community Through P2P with The Immune Deficiency Foundation’s Aimee Yrlas-Simpson & Angela Ridenour 39:13

4M ago39:13

39:13

Celebrity gossip magazines love to remind us: "Stars — they’re just like us!" And while the world of digital creators and streamers can feel like a distant universe, the truth is that these online personalities aren’t so different from the rest of us. As P2P fundraising increasingly intersects with the creator community, it’s easy to view streamers…

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Assessing Opportunities For New Market Growth with The ALS Association’s Cliff Whitlock 31:29

5M ago31:29

31:29

In the early days of peer-to-peer fundraising events, one of the fastest ways to grow a program was to launch events in new markets. But many organizations scaled back over time, whether due to strategic shifts or limited resources. So what happens when it’s time to grow again? How do you evaluate new opportunities and ensure long-term success? Exp…

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Problems in practice: Insurance with Dr. Marcus Shaker 31:49

5M ago31:49

31:49

Transcript: https://primaryimmune.org/sites/default/files/Transcript%20Shaker.pdfDr. 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 pay…

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Jorey's monthly wrap-up: April 2025 4:06

5M ago4:06

4:06

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

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Inspiring Your P2P Community With A Bold, Audacious Goal With Pat Morrissey, Team Human Powered Potential & Liz Deimer, The Michael J. Fox Foundation For Parkinson’s Research 45:21

5M ago45:21

45:21

In the P2P fundraising world, we often look to the spark of organic, supporter-led moments like the Ice Bucket Challenge as examples of what’s possible when passion meets purpose. But when lightning strikes, are you ready to catch it? This episode dives into one such moment: when four friends, Pat Morissey, Brendan Cusick, Peter Durso, and Scott Fo…

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SPECIAL LOOK: Advocacy Day 2025 Training 1:05:36

5M ago1:05:36

1:05:36

Transcript: https://primaryimmune.org/sites/default/files/Advocacy%20Day%20Training%20Transcript.pdfThis 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 episo…

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Living well with PI: Impact of federal policy changes on the PI community 1:04:22

6M ago1:04:22

1:04:22

Transcript: https://primaryimmune.org/sites/default/files/TRANSCRIPT%20Legislative%20webinar.pdfThis 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 …

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Bold Conversations: The elephant in the exam room 55:37

6M ago55:37

55:37

https://primaryimmune.org/sites/default/files/Bold%20Conversations%203.2%20Transcript.pdfIn 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 primaryimmun…

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Creating Synergy Across A Growing P2P Portfolio with Princess Margaret Cancer Foundation’s Steve Merker 28:54

6M ago28:54

28:54

In the early days of the P2P industry, most nonprofits concentrated on one tentpole P2P event—typically a walk or cycling program—which allowed them to align staffing, branding, and resources around a single, large-scale initiative, focusing on broad market appeal. However, as the industry has evolved, so too has the need to diversify offerings—bot…

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Decoding PI: The science of gene therapy and gene editing 1:14:45

6M ago1:14:45

1:14:45

Transcript: https://primaryimmune.org/sites/default/files/01PROOF%20transcription%20gene%20editing%20webinar.pdfView a PDF of this presentation: https://primaryimmune.org/sites/default/files/FOR%20WEB%20-%20Gene%20editing.pdfSusan Prockop, MD of Boston Children's Hospital and Harvard Medical School provides an overview and recent updates to gene t…

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Jorey's monthly wrap-up: March 2025 2:31

6M ago2:31

2:31

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

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Undiagnosed: Gaslit and Gatekept 48:03

7M ago48:03

48:03

Transcript: https://primaryimmune.org/sites/default/files/FOR%20WEB%20Undiagnosed%20Ilana%20Transcript.pdfTikTok 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 gasli…

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ChronicXTwenties: Transitioning from pediatric to adult care with Riley and Nick 37:53

7M ago37:53

37:53

Transcript: https://primaryimmune.org/sites/default/files/Cx20%201.1%20transcript.pdf.Immune Deficiency Foundation volunteers Riley and Nick discuss the complications and strategies that helped them transition from pediatric to adult care for their chronic illnesses.The information, terminology, and opinions presented in this forum do not necessari…

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Jorey's monthly wrap-up: February 2025 5:51

7M ago5:51

5:51

Immune Deficiency Foundation president and CEO Jorey Berry provides updates to the community for February 2025By Immune Deficiency Foundation

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Bold Conversations: Health insurance 43:18

8M ago43:18

43:18

Transcript: https://primaryimmune.org/sites/default/files/Bold%20Conversations%203.1%20Transcript.pdfJalisa Clark is a Research Fellow at the Center on Health Insurance Reforms (CHIR) at Georgetown University’s McCourt School of Public Policy. Today, she joins Dr. Nicole for a deep dive into inequitable health insurance practices in the U.S.The inf…

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CEO update from Jorey Berry: January 2025 3:58

9M ago3:58

3:58

CEO update from Jorey Berry: January 2025primaryimmune.org/resourcesBy Immune Deficiency Foundation

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Living well with PI: Mental health and wellness tips 1:21:20

9M ago1:21:20

1:21:20

Transcript: https://primaryimmune.org/sites/default/files/Mental%20health%20tips.pdfBecky Lenning is the owner and clinical director of Yellow Lotus Clinical Services for Healing and Wellness, where she brings over fourteen years of clinical experience as a licensed professional counselor to her practice.To learn more, volunteer, or donate, visit p…

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Undiagnosed: The Businessman 26:09

9M ago26:09

26:09

CONTENT WARNING: This episode contains discussions of suicide planning. If you need help, call the National Suicide Hotline at 988.Transcript: https://primaryimmune.org/sites/default/files/Undiagnosed%20Matt%20Lesser%20Transcript.pdf.The story of Matt Lesser is one that's marked, of course, by persistence, but also by vulnerability, self reflection…

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Confronting Societal Stigma Through P2P Fundraising with Shatterproof’s Shannon Greene 31:23

10M ago31:23

31:23

Peer-to-peer fundraising inherently involves a degree of vulnerability—sharing your personal story and hoping others will respond with support and donations. But what happens when the story is difficult to tell? When the cause itself is stigmatized? Or when you’re unsure how your loved ones will react? This week on the P2P Soapbox, Shannon Greene, …

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Q&A: Protecting yourself against COVID, flu, and RSV 30:43

10M ago30:43

30:43

TRANSCRIPT: https://primaryimmune.org/sites/default/files/Covid%2C%20Flu%2C%20RSV.pdfThis informative Q&A session offers crucial insights for patients, caregivers, and healthcare professionals. Don't miss this opportunity to enhance your understanding of immunization in the context of PI and learn practical steps for safeguarding health during chal…

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Decoding PI: Unraveling the GI Connection 1:16:05

10M ago1:16:05

1:16:05

Transcript: https://primaryimmune.org/sites/default/files/Transcript%20-%20GI%20Connection.pdfView a PDF of this presentation: https://primaryimmune.org/sites/default/files/FOR%20WEB%20-%20PI%20and%20GI%20connection.pdfPeter J. Mannon, M.D. discusses common gastrointestinal symptoms for people with primary immunodeficiency as well, and discusses th…

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Navigating Crisis During Event Week with Lurie Children’s Ted McCartan 33:35

10M ago33:35

33:35

The seasoned event fundraising professional knows that in-person events often bring unexpected challenges—whether it’s extreme weather, political unrest or medical emergencies. While these worst-case scenarios can take many forms, the key to navigating them successfully lies in two essential elements: a strong external communication plan and an int…

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Casting A Wider Net For P2P Growth with the American Diabetes Association’s Megan Gavin 20:47

11M ago20:47

20:47

As many P2P programs strive to expand, organizations often grapple with a core question: should they focus resources on deepening engagement with current supporters or invest in acquiring new ones? The answer isn’t always one strategy over the other—it’s important to consider your mission’s scope. For causes that directly impact millions, investing…

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Q&A: Antibody Deficiencies with Dr. Luke Wall 32:42

11M ago32:42

32:42

Transcript: https://primaryimmune.org/sites/default/files/LUKE%20WALL%20antibody%20deficiency%20q%26a.pdfDr. Luke Wall discusses antibody deficiencies in this Q&A from October 24, 2024.The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.…

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ChronicXTwenties: Heartbreakingly beautiful (Part 2) 1:13:06

11M ago1:13:06

1:13:06

Transcript: https://primaryimmune.org/sites/default/files/Cx20%20ep%202%20transcript.pdfIn part two of our pilot episode, Heartbreakingly Beautiful, Victoria Medl and Cassie Mummert continue their discussion about hope, support, and learning who to trust with vulnerable truths about their health. Content warning: This podcast features sensitive sub…

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Rebroadcast • Prioritizing Ethical Storytelling In Peer-to-Peer Events with Covenant House International’s Meghan Coan & Colleen Veldt 35:06

12M ago35:06

35:06

Have you ever stopped to question if your fundraising messaging is ethical? Despite our best intentions as professional fundraisers, it is crucial for us to recognize that certain traditional fundraising methods no longer hold up under scrutiny in 2023. In our efforts to showcase the serious need for donations with often sad, evocative imagery, we …

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ChronicXTwenties: Heartbreakingly beautiful (Part 1) 1:01:50

12M ago1:01:50

1:01:50

Transcript: https://primaryimmune.org/sites/default/files/TRANSCRIPT%20-%20ChronicxTwenties%201.1-1.pdfIn this 2-part pilot episode, two members of the Immune Deficiency Foundation’s youth advisory committee -- Cassie Mummert and Victoria Medl – discuss mental health coping strategies, spirituality, and the complications and joys of dating other pe…

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Bold Conversations: CGD and medical immigration with Susanna Raj 42:57

12M ago42:57

42:57

Transcript: https://primaryimmune.org/sites/default/files/Transcript%20-%20BC%2002.02%20Susanna%20Raj.pdfSusanna Raj joins Dr. Nicole to discuss the harrowing story of her childhood immigration from India to receive CGD treatment in the United States and Canada.The information, terminology, and opinions presented in this forum do not necessarily re…

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Mobilizing The Next Generation Of Fundraisers with the Canadian Cancer Society’s Laurie Benner 25:34

1y ago25:34

25:34

One of the most pressing questions facing the peer-to-peer (P2P) fundraising industry is, "How do we better engage the next generation of fundraisers?" With each generational shift, it can be daunting to understand the motivations of the emerging group and adapt to their preferences. Gen Z and young Millennials, now aged 12 to 30, are no exception.…

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Curating Space For Emotional Healing At P2P Events with Colorectal Cancer Alliance's Chelsea Edwards 32:36

1y ago32:36

32:36

Champions of the peer-to-peer industry understand that P2P events go far beyond just fundraising, raising awareness or building community. For those directly affected by our causes, these events can provide a powerful outlet for emotional healing—a meaningful way to take action, mourn, celebrate and feel less isolated in their struggles. However, t…

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Bold Conversations: Inclusion in practice at the 2024 PI Conference 36:46

1y ago36:46

36:46

Transcript: https://primaryimmune.org/sites/default/files/Bold%20Conversations%202.2%20Transcription.pdfImmune Deficiency Foundation staff members Alissa Creamer and Megan Messick join Dr. Nicole to discuss the inclusions efforts that went into planning the blockbuster 2024 PI conference.Dr. Nicole's conference session (The Elephant in the Exam Roo…