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HypoPara Unscripted

hypoparaunscripted

HypoPara Unscripted brings together experts and patients for meaningful, honest, candid conversations about living with hypoparathroidism, a rare condition of the hypoparathyroid glands (4 tiny endocrine glands in the neck) which which make a hormone that regulates calcuim and phosphorus levels in the blood. From treatments and advances to real life challenges and resilience, the goal of this podcast is simple: to educate, empower and connect the hypopara community. Hosted by Patty Keating, patient advocate and director of the Hypoparathyroidism Association, this podcast will bring a better understanding of hypopara as well as hope to all who are living with this difficult rare disease.

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9 episodes
monthly
Avg 25 min
English

Episodes 9

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#9
Saturday · 21 min
A Community Like No Other: Voices from the HypoPara Conference
In this special episode find out what happens when more than 200 people come together to share their journey with HypoPara. Patty Keating and Hypopara Unscripted producer Amy Brooks, take you inside the 2026 Annual Hypoparathyroidism Association Conference to hear directly from the attendees who made it unforgettable. This is an up close account from newly diagnosed patients, longtime advocates and care givers, as well as medical experts, scholarship recipients and industry leaders. These candid in person conversations capture the importance of being understood, the hope for new treatments and the power of connection. The overall consensus about the HypoPara conferences is not only what is learned, but uniting people who know just what you're going through. Join Patty for this exciting episode where you’ll experience laughter, tears, personal triumphs and feelings of hope, leaving us with another heartfelt reminder that no one should have to navigate hypoparathyroidism alone.
S1 · E8
September 30 · 20 min
Biotech, Clinical Trials & the Patient Voice
In this episode of HypoPara Unscripted, Patty sits down for a gripping conversation with industry veteran Stewart Hallett to speak about the difference between biotech and big pharma. Thanks to his notable experience, Stewart reveals the complex journey of drug development, how clinical trials work, as well as the billions in cost and just how long it takes to successfully bring a drug to market. Stewart and Patty also uncover the undisputed importance of the patient voice as an integral part of the process. This leads Stewart to share a powerful, personal story one which shaped his career and his belief that it must always be “about the patient”. Join Patty for this enlightening episode and find out what it all means for the HypoPara community.
S1 · E7
September 1 · 26 min
You’re Not Alone: Megan’s Journey with Hypopara
What happens when a surgery described as “routine” changes your life? For Megan, thyroid removal led to hypoparathyroidism and left her with severe hypocalcemia, exhaustion, anxiety, cognitive struggles and pain, not to mention years of trying to get doctors to understand what had happened to her. In this episode of Hypopara Unscripted, Megan gets real about the hardest parts of living with hypopara, including ER visits where no one seemed to know how to treat her, her struggle to continue to work, her fights with insurance and her fear of losing access to the treatment that finally gave her some of her life back. Finally, Megan explains the moment she discovered the Hypopara community and how her connections and advocacy has helped herself and others feel much less alone.
S1 · E6
July 31 · 29 min
Debz: Being Rare in Ireland - a Journey of Hope and Laughter
What if doctors told you the difficult symptoms you had been experiencing for 28 years was just…anxiety. Only to finally uncover that you were actually living with a rare, genetic, life-threatening disease? For years, Debz fought for answers while her body fought to survive. She endured countless hospitalizations, heartbreaking setbacks and still to this day lives with the constant fear that the treatment keeping her alive could be taken away at any moment. But somehow, through it all, Debz refuses to lose hope. In this unforgettable episode of HypoPara Unscripted, Debz opens up to Patty about her raw and difficult journey with HypoPara. It is a story of resilience, strength, advocacy and purpose in the face of unimaginable misdiagnoses and emotional challenges. Debz’ journey will make you laugh, cry and reminds us all why hope and the people who stand beside us, can change everything.
S1 · E5
June 30 · 23 min
More Than a Pharmacy; The Team Behind Your Treatment
What makes specialty pharmacy so special? In this episode of HypoPara Unscripted, Patty speaks with Katie Gillick, patient advocate at Orsini Specialty Pharmacy living with HypoPara, and pharmacist Michelle Hamblin to show us how they get the only FDA approved HypoPara treatment in the hands of patients. Together, Katie and Michelle tell us how specialty pharmacies are different from retail drug stores, including patient support, monitoring for side effects and working with insurance companies, making it clear that although starting a new treatment can feel overwhelming you won't have to navigate it alone! Katie shares her own personal journey with HypoPara which shapes the care she gives to others, helping to carry out Orsini’s promise that no patient will ever be left behind.
S1 · E4
May 31 · 23 min
Name It, Claim It, Tame It: Heather Novak’s HypoPara Journey
In honor of World Hypopara Day, Patty sits down with patient advocate and award-winning author Heather Novak for an inspiring conversation about finding purpose while living with the challenges of a rare disease. Heather shares her remarkable journey as a teenager with unexplained broken bones to a diagnosis of hyperparathyroidism, until after she had surgery, when she woke up with hypoparathyroidism. Heather opens up to Patty about how she was misunderstood for so many years. Medical professionals downplayed and misdiagnosed her symptoms; dismissing them as anxiety and stress which has impacted her mentally and emotionally to this day. But for Heather, writing became both a creative outlet and a source of hope, allowing her to advocate for others living with chronic illness while pursuing her dream of being a best selling novelist. This episode is a powerful reminder that while hypoparathyroidism may be part of your story it doesn’t have to define your future when you name it, claim it and tame it.
#3
April 30 · 29 min
One Diagnosis, Three Lives, One Powerful Pivot
In this episode of Hypopara Unscripted, Patty welcomes a cast of characters; three inspiring women who share how hypoparathyroidism brought them together and changed their lives forever. If you have ever felt alone in your diagnosis, this episode is a reminder that through the power of friendship and connection you are not. From shocking diagnoses to a true sisterhood; Liz, Chrissy, and Lisa’s bond, love and support of each other have countered their worries, fears and challenges of living with this difficult and rare condition. Indulge in this uplifting conversation about togetherness, hope and remembering that in order to make the most of life, you may sometimes need to ‘pivot’! To reach Patty for questions and comments you are welcome to email: pkeating@hypopara.org
S1 · E2
March 26 · 27 min
More Than What the Labs Show - a Conversation with Hypopara Expert Dr. Rubin
In this second episode of HypoPara Unscripted, Patty talks with expert Dr. Rubin about all things hypopara. From the “SHINE” study (a research history examination of participating hypopara patients), to the real-life challenges patients live with every day, Dr. Rubin explains the effects hypopara has on bone health, brain fog, fatigue, and cognitive function. Join Patty and Dr. Rubin as she encourages self advocacy, explains how patients sometimes just don't "feel right” even though lab results look “normal” and she shares the quality of life potential with PTH based therapies. Dr. Rubin’s insight and compassion blended with Patty’s profound patient perspective offers hope, validation and a deeper understanding of what it truly means to live with hypoparathyroidism. To get in touch with Patty Keating, Executive Director of the Hypoparathyroidism Association, please email her at pkeating@hypopara.org
S1 · E1
February 26 · 23 min
Hope, Hormones and Hypopara: A Candid Conversation With Dr. Michael Mannstadt
In this premiere episode of HypoPara Unscripted, your host Patty Keating, Executive Director of the Hypoparathyroidism Association as well as a post-surgical hypopara patient herself, talks with world-renowned endocrinologist Dr. Michael Mannstadt. Together, they uncover how hypoparathyroidism care has evolved, the breakthroughs in genetics, PTH therapy improvements and why validation and respect mean so much to hypopara patients. This honest, hopeful and compelling first episode of Hypopara Unscripted represents a true triumph for those living with hypoparathyroidism and their providers!

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