Podcasts by Have You Herd? An IDF Podcast
This podcast is a service of the Immune Deficiency Foundation, or IDF, a nonprofit organization dedicated to improving the diagnosis, treatment and quality of life of people diagnosed with primary immunodeficiency, or PI. People living with PI are the zebras of the medical world & the IDF community is one big zebra herd.
To learn more about primary immunodeficiency and the PI community, please visit the IDF website at www.primaryimmune.org. If you have any questions you would like to be answered, email us at idf@primaryimmune.org.
Special thanks to Bryson Kemp for scoring this podcast! www.brysonkempmusic.com
Further podcasts by Immune Deficiency Foundation
Podcast on the topic Gesundheit und Fitness
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What To Ask Your Healthcare Provider from 2022-02-11T14:46:21
Being diagnosed with a rare disease like PI can be intimidating, as well as confusing. Hear from panelists, Nicole Rochester, MD, Mary Hintermeyer, APNP, and Brian Rath, JD as they review some impo...
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IDF Advocate Connections: Becoming A Rare Disease Advisory Council Member from 2022-01-31T18:25:41
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 ...
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Opportunities For Young People Of Color In Science from 2021-12-29T15:00:02
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 ...
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Living With CGD: A Discussion About BMT - A Diagnosis-Specific Episode from 2021-12-16T15:13:05
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-...
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Assessing Neurodevelopmental Outcomes In SCID Patients: A Collaborative Study By IDF And PIDTC from 2021-11-17T20:05:10
In this SCID Compass episode, we will be talking with two research specialists, Virdette L. Brumm, Ph.D., and Sharon A. Kidd, MPH, Ph.D., from the Primary Immune Deficiency Treatment Consortium or ...
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Swimming Upstream: Addressing Payer Challenges & Ensuring Access To Genetic Testing from 2021-10-28T21:00:24
In this episode, we will be addressing payer challenges as well as discussing the ability to ensure access to genetic testing with Manish Butte, MD, Ph.D., and Abraham Yunis, MBA. This session was ...
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Clinical Research Trials & You from 2021-10-15T20:18:12
Are you interested in learning more about clinical research trials that are available for you? In today’s episode, we will be discussing important information about clinical trials with Jason Bradt...
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How One Family Navigates Isolation For SCID During COVID - Part Of The SCID Compass Series from 2021-09-30T14:12:13
Undergoing treatment for Severe Combined Immunodeficiency or SCID involves months in the hospital as well as months of isolation. Today, we will be speaking with Rachel Homer about how her family n...
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Teens & Vaccines_Part Of The Teen Series from 2021-09-17T20:25:51
As the Coronavirus progresses, the COVID-19 vaccine continues to be our best form of protection against the deadly virus, especially for those living with primary immunodeficiency or PI. The CDC re...
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Teens & Vaccines - Part Of The Teen Series from 2021-09-17T20:25:51
As the Coronavirus progresses, the COVID-19 vaccine continues to be our best form of protection against the deadly virus, especially for those living with primary immunodeficiency or PI. The CDC re...
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Successful Fundraising & Team Building: Learning From An IDF Walk For PI Team Captain from 2021-08-31T20:59:01
One of IDF’s many great initiatives, IDF Walk for Primary Immunodeficiency, unites all members of the PI community to help create better lives for those living with these rare, chronic disorders. Y...
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The Public Face of PI from 2021-07-23T16:14:45
For those living with primary immunodeficiency, awareness about these rare, chronic disorders is crucial. Listen as influential leaders within the PI community, Harper Spero, Carol Ann Demaret, Aut...
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Health Equity from 2021-07-16T19:14:04
As our nation grapples with issues of bias and racism, we have an obligation to address racial disparities in the PI community, in medicine, and in society at large. Listen as our panelists, Nicole...
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Plasma Ethics from 2021-07-09T18:10:37
Plasma-derived therapies are used daily by thousands of individuals around the world with chronic, rare conditions. Because of its diverse and lifesaving uses, knowledge of plasma-derived therapies...
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Q&A with Kathryn Stephens from 2021-06-11T16:34:35
While we usually dive into topics that are medical in nature, we wanted to take the opportunity today to talk with a subject matter expert of a different type - IDF Interim CEO, Kathryn Stephens. K...
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Low T Cell Counts In Babies - Part of the SCID Compass Series from 2021-05-26T19:46:48
As part of the blood screening during a newborn screening at birth, doctors measure the T cell receptor excision circles or TRECs to test if they are within a normal or abnormal range. Abnormal TRE...
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Wiskott-Aldrich Syndrome (WAS) - A Diagnosis Specific Episode from 2021-04-30T14:28:32
Wiskott-Aldrich Syndrome or WAS is a unique form of primary immunodeficiency. WAS primarily affects males because it’s an X-linked recessive condition and is characterized by abnormal bleeding and ...
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Pain Management: From Infusions To Everyday Life from 2021-03-31T18:22:02
Many people living with primary immunodeficiency rely on injectable medical therapies such as immunoglobulin replacement therapy, or Ig, to maintain healthy lives. Receiving these infusions can be ...
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Genetic Counseling - Part of the SCID Compass Series from 2021-02-18T18:12:21
Receiving advice or support after diagnosis of a genetic condition can be overwhelming for families. One resource for information about the condition and for counseling related to living with the u...
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A Year In Our Lives In The Age Of COVID-19 - Part Of The Teen Series from 2021-01-29T21:31:19
As we continue to battle COVID-19 into 2021, everything around us seems to be changing - attending school is now virtual, seeing our friends is done socially distant while wearing a mask, vacation ...
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Importance Of Long-term Follow-up After Treatment - Part of the SCID Compass Series from 2020-12-14T19:07:31
Severe Combined Immunodeficiency, or SCID, is a life-threatening primary immunodeficiency, typically diagnosed at birth. Early detection is critical for these children, as is the prevention of infe...
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Telemedicine: Getting Healthcare Online from 2020-11-19T15:27:05
Making in-person doctor’s appointments and checkups have always been the norm for all of us. However, with the spread of the coronavirus, many of us have tried to minimize entering new spaces. It c...
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Navigating Flu Season from 2020-10-29T13:30:13
During the fall and winter months, as we begin to bundle up for the cold weather, we must also remember it’s time to protect ourselves during flu season. Influenza, commonly referred to as the flu,...
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All About Plasma from 2020-09-25T14:06:37
People living with a primary immunodeficiency, or PI are missing key parts of their immune system that help fight infections. Some types of PI leave people unable to make antibodies of their own. M...
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Being Independent - Part of the Teen Series from 2020-08-11T14:18:45
Figuring out your journey through life can be tough, especially as you grow older and more independent. One of the best parts of being a teenager is having a little freedom and making your own deci...
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Common Variable Immune Deficiency (CVID) - A Diagnosis Specific Episode from 2020-03-16T19:24:35
Common Variable Immune Deficiency, or CVID, is just one of the more than 400 primary immunodeficiencies, characterized by low levels of serum immunoglobulins and loss of antibodies, which causes an...
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Hemophagocytic lymphohistiocytosis (HLH) - A Diagnosis Specific Episode from 2019-03-20T19:55:25
Hemophagocytic lymphohistiocytosis (HLH) is a severe systemic inflammatory syndrome that can be fatal. HLH occurs when histiocytes and lymphocytes become overactive and attack the body rather than...
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College Concerns - Part of the Young Adult Series from 2018-11-28T18:02:39
The transition to college is both stressful and exciting. For those living with a chronic disease like a primary immunodeficiency (PI), adjusting to campus life can be even more challenging. Colleg...
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Employment and PI - Part of the Young Adult Series from 2018-11-07T20:14:47
For people with primary immunodeficiency diseases (PI), employment is about more than just making money and job satisfaction. You need a job that will allow you to perform at a high standard with y...
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Coping with the Emotional Dimensions of PI - Part of the Young Adult Series from 2018-10-17T17:23:50
People living with chronic illnesses know the physical toll it takes on the body. But it also takes an emotional toll and understanding how you are feeling mentally is as important as understanding...
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Taking Control of Your Healthcare Management - Part of the Young Adult Series from 2018-09-24T14:56:52
Young adults with primary immunodeficiency diseases (PI) must develop independent disease self-management skills as they transition from pediatric to adult-oriented healthcare systems. Join this po...
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