9 Podcasts Highlighting Voices From the Rare Disease Community

PicnicHealth | 9 Podcasts Highlighting Voices From the Rare Disease Community
April 23, 2021
Blog post originally written by the AllStripes community team. AllStripes was acquired by PicnicHealth in 2023.

Blog post originally written by the AllStripes community team in 2021. AllStripes was acquired by PicnicHealth in 2023. This blog post has since been updated to reflect current active podcasts

Whether you’re already a podcast lover or are just starting to explore the podcast universe, you're in luck: There are a good number of podcasts that highlight voices from the rare disease community! We’ve rounded up some of the rare disease podcasts we love that are going strong and putting out new and upcoming episodes. Here are some reliable — and educational — podcasts from and for the rare disease community:

1. Once Upon a Gene by Effie Parks

Effie, a parent of a child with a rare disease, shares her family’s experience, interviews with experts, and moving stories from other rare disease families who have persevered, cried, bonded, and grown. These are stories of children who have been told that they cannot–and that have proved the world wrong.

2. Two Disabled Dudes by Kyle Bryant and Sean Baumstark

Co-hosts Kyle and Sean are both affected by a rare disease called Friedreich’s ataxia (FA), a neurodegenerative movement disorder. They interview rare disease leaders, paralympic athletes, health professionals, authors, speakers and more, to discuss living life beyond circumstances.

3. See the Invisible: Living with an Invisible or Rare Disease by Ronda F Jefferson

The host of this podcast seeks to share information about living with and dealing with a chronic or invisible disease, made even more difficult when the disease is rare. She shares her story and also invites guests to share their viewpoints and experiences, with the goal of helping patients, families, and other support systems better communicate and empathize with each other.

4. RAREcast by Global Genes

This podcast focuses on the intersection of rare disease with business, science and policy. Recent topics include the economic toll of rare disease and CRISPR.

5. The Rare Life by Madeline Cheney

Madeline has a son with a rare disease, and uses this podcast as a space to discuss parenting a child with a rare condition. Episodes consist of her sharing her expertise with special needs parenting, interviewing parents of children with complex, rare medical conditions, and speaking with professionals.

6. Wait, How Do You Spell That? by Patient Worthy

This podcast talks about issues affecting people living with rare and underdiagnosed conditions, with discussions with advocates across the community. The podcast exists to chat and laugh and learn about issues that impact living with diseases doctors can’t even spell.

7. Rare with Flair by Casey Greer & Cassandra Mendez

Casey and Cassandra are a pair of best friends with the same rare disease. Their goal is simple: sharing their lives to showcase the beauty and normalcy in disability, while having fun together. They’ll also touch on accessibility, friendships, style, and everything in between as they live their best, rare, lives!

8. Go Shout Love by Go Shout Love Foundation

Go Shout Love tells the stories of amazing kids on rare medical journeys through interviews with their families.These conversations are designed to inspire and encourage anyone who listens.

9. My Rare Disease by Katy Baker

On this podcast, the host, who was diagnosed with a rare disease as an infant, chats with other rare disease patients, health professionals, and advocates to talk about all aspects of rare disease. They discuss relationships, mental health, and much more.



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Create a List

List the names of all the doctors, hospitals, and other facilities your loved one visits regularly, along with those they have visited in the past. Try to go back as far as you can, striving for at least the last 5-10 years, but do your best. Even if you can’t remember them all, having a strong baseline can help you quickly identify gaps in records.

Ensure You Have the Appropriate Legal Status

It is important to make sure that you are fully empowered to make decisions on behalf of your loved one with Alzheimer’s. Your relationship status with the patient may not be enough to legally give you access to your loved one's medical information. It is a good idea to talk to an expert about securing special legal status, such as Power of Attorney (POA), a legal document that allows an individual to name someone as their decision maker should they no longer be able to make decisions on their own.

Gather and Organize the Medical Records in One Place

It’s important to have all of your loved one’s medical records together in one spot. This makes it much easier for you and your loved one’s physicians to accurately map the patient’s medical journey and more easily share information between doctors. Fortunately, tools exist to make record management and access simple. A free resource like PicnicHealth helps you collect and organize all of this information. PicnicHealth’s intuitive timeline allows you to pinpoint data across the medical history, eliminating your need for keeping heavy binders filled with paper records or keeping track of multiple software portal logins.

Review the Medical Records to be an Informed Advocate

The better you understand your loved one's medical history, the better you can advocate on their behalf. Access and understanding of this information will help you to ask informed questions with physicians. Through regular communication backed by the data in the medical records, you can help your loved one’s care team develop a more successful care plan.

Learn more about PicnicHealth’s commitment to the Alzheimer’s community and the Alzheimer’s Association

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Together, we can make a difference.

Learn more about PicnicHealth’s commitment to the Alzheimer’s community and the Alzheimer’s Association

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Build a support network.

When you’re juggling appointment times and insurance claims, putting a robust support system together might not strike you as the most urgent task. Investing the time to cultivate relationships with people can turn to in times of need will pay dividends. The next time you need a last-minute ride or just someone to listen, you won’t be on your own.

There are many condition-specific support groups and support groups for caregivers generally in person or online. In addition to the encouragement and empathy they provide, support groups can be a helpful source of tips, resources, and recommendations for navigating caregiving.


Stay organized.

The backbone of effective caregiving is organization. Keep medical information, appointment schedules, and medication lists in order. Use a planner or a digital service like PicnicHealth to stay on top of your responsibilities. This attention to detail can prevent future complications and reduce day-to-day stress.


Explore treatments and clinical trials.

We’ve seen incredible breakthroughs in treatment over the past couple of years, powered by patients and their caregivers participating in research. Stay in the loop about the latest in medical advancements and available resources that could benefit your loved one. Whether it’s a new therapy option or a community service that aids independence, being informed can make a world of difference in the quality of care you provide.


Make time for self-care.

It may seem self-centered to focus on self-care—but when you feel good, you can be a better caregiver. Whether it’s exercise, a mindfulness practice, a soak in the bath, or just time to rest when you need it, carve out those moments in the day when you can unwind, reset, and stay healthy mentally and physically. Think of it as building up your reserves of kindness, patience, and understanding—which can only benefit your loved one. No one can pour from an empty cup.

Having trouble managing your loved one's medical records?

Easily manage all of your loved one's medical records and contribute to ongoing Alzheimer's research with PicnicHealth.

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LC-FAOD Odyssey: A Preliminary Analysis, presented at INFORM 2021

Data from real-world medical records:

(from 13 patients with LC-FAOD)

16 yrs old

Median age at enrollment

38% Female

15 providers / patient

7.5 years of data / patient

Data from patient-reported outcome (PRO) survey

(from 13 patients with LC-FAOD)

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However, it's important to consult with a healthcare provider or registered dietitian to determine the appropriate amount of protein for your individual needs. In general, a diet with moderate protein intake (about 0.8 grams per kilogram of body weight per day) is recommended for people with kidney diseases.

Learn more about contributing to IgAN research with PicnicHealth. 

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Keep an Eye on These Test Results

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Resource Flyer

Explore the essential takeaways from Victoria's Webinar, along with some resources that she shared.

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Pre-Appointment Worksheet

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