Rare Connection
Claim This Podcastby Joanna
Podcast Authority
Beta
Podcast Overview
<div>Formerly Nutrition Equity, rare connection is an extension of the podcast to include all 10,000 rare conditions and not just those covered by the Medical Nutrition Equity Act. Some of the conditions may be the same, but I am trying to turn this into a learning experience for those in the medical feild, policy leaders, and those who are just interested in hearing about rare conditions and patient stories. Rare conditions are called zebras hence the zebra striped ribbon. More common conditions are called horses. Doctors tend to learn a lot about the common conditions, but rare conditions are a paragraph in a text book at best because the medical field isn't looking at the whole picture. Rare conditions when combined are actually bigger than cancer and strokes combined and if you have a rare condition you most likely have more than one or will develop another within your lifetime. As someone with a rare condition myself (Homocystinuria or HCU), know that having a rare condition can be very lonely. Thereis normally a phsycological aspect to any rare condition, and because of lack of understanding they often go undiagnosed or misdiagnosed which can cause serious health consequences or even death. If you are interested in talking and feel comfortable on camera please contact me at joanna.ball41@gmail.com. I have a visual version of this podcast on YouTube also under my cooking channel Rare Chef.</div>
Language
🇺🇲
Publishing Since
6/17/2023
Unlock The Full Podcast Authority Score Report
See how your podcast performs across key metrics
Podcast Authority
BetaRecommendations available
Unlock the full report to see detailed tips
Recommendations available
Unlock the full report to see detailed tips
Unlock comprehensive insights including:
- • YouTube presence analysis
- • Social media reach metrics
- • RSS compliance scoring
- • Podcast 2.0 features
- • Technical standards
Detailed Analytics
- Complete breakdown of all 19 authority metrics
- Personalized recommendations for each metric
- Industry benchmarks and comparisons
- Technical RSS feed analysis and compliance scoring
Growth Strategies
- Step-by-step action plans for improvement
- Quick wins to boost your score immediately
- Pro tips from successful podcasters
See how your show performs across every key metric
High authority scores make your podcast more attractive to industry leaders and influencers who want to appear on credible shows.
Sponsors look for podcasts with proven authority and engagement. Your score demonstrates your podcast's value to potential partners.
Understanding your strengths and weaknesses helps you make data-driven decisions to expand your listener base effectively.
1 verified contact email on file for Rare Connection
Pitch yourself as a guest, propose sponsorships, or reach out directly to the host.
Recent Episodes
May 9, 2026
McCune Albright Syndrome With Dr. Giwa From Atossa Therapeutics
Send us Fan Mail What happens when one rare condition affects the bones, skin, hormones, and development—but looks completely different in every patient? “In this episode of Rare Connection, Joanna is joined by Dr. Adebola Giwa, a pediatric endocrinologist, physician-scientist, and clinical lead for rare disease drug development at Atossa Therapeutics. He brings more than 15 years of experience in endocrinology, musculoskeletal disease, and innovative therapeutic development for rare conditio...
April 22, 2026
Friedreich's Ataxia With Alexis From Tennessee
Send us Fan Mail What does it really take to maintain independence when your body is changing? For people living with rare diseases, that question becomes part of everyday life—navigating changes in mobility, access to care, and the challenge of finding the right support. In this episode of Rare Connection, I speak with Alexis Baker, who shares her journey to a diagnosis of Friedreich's ataxia, a rare, progressive condition that affects coordination, balance, and independence. Like many in th...
April 14, 2026
Adrenoleukodystrophy With Elisa From New York
Send us Fan Mail Elisa's son, Aidan, was born healthy—but by first grade, he began losing his vision. He was later diagnosed with adrenoleukodystrophy (ALD), a rare genetic condition that progresses rapidly without early intervention. Aidan passed away at just 7 years old. After his diagnosis, Elisa learned that a newborn screening test for ALD already existed—but it had not been implemented in her state at the time. In this episode, Elisa shares Aidan’s story and how she turned her grief int...
80 total episodes available
Recent guests on Rare Connection
Guests from recent episodes — sign up to see every guest that has ever appeared on this show.
Paul From California
Guest
Regina
Guest
Serena
Guest
Tami from Kansas
Guest
Frank From New York
Guest
Brenda From Florida
Guest
Deep-dive analytics for Rare Connection
Frequently asked questions
Have a different question and can't find the answer you're looking for? Reach out to our support team by sending us an email and we'll get back to you as soon as we can.
- What is Rare Connection?
<div>Formerly Nutrition Equity, rare connection is an extension of the podcast to include all 10,000 rare conditions and not just those covered by the Medical Nutrition Equity Act. Some of the conditions may be the same, but I am trying to turn this into a learning experience for those in the medical feild, policy leaders, and those who are just interested in hearing about rare conditions and patient stories. Rare conditions are called zebras hence the zebra striped ribbon. More common conditions are called horses. Doctors tend to learn a lot about the common conditions, but rare conditions are a paragraph in a text book at best because the medical field isn't looking at the whole picture. Rare conditions when combined are actually bigger than cancer and strokes combined and if you have a rare condition you most likely have more than one or will develop another within your lifetime. As someone with a rare condition myself (Homocystinuria or HCU), know that having a rare condition can be very lonely. Thereis normally a phsycological aspect to any rare condition, and because of lack of understanding they often go undiagnosed or misdiagnosed which can cause serious health consequences or even death. If you are interested in talking and feel comfortable on camera please contact me at joanna.ball41@gmail.com. I have a visual version of this podcast on YouTube also under my cooking channel Rare Chef.</div> - How often does this podcast release new episodes?
This podcast updates daily.
- Where can I listen to this podcast?
This podcast is available on 10 platforms including Apple Podcasts, Spotify, and more. You can also use the RSS feed directly.
- Does this podcast accept guests?
Information about guest appearances is not available.
Legal Disclaimer
Pod Engine is not affiliated with, endorsed by, or officially connected with any of the podcasts displayed on this platform. We operate independently as a podcast discovery and analytics service.
All podcast artwork, thumbnails, and content displayed on this page are the property of their respective owners and are protected by applicable copyright laws. This includes, but is not limited to, podcast cover art, episode artwork, show descriptions, episode titles, transcripts, audio snippets, and any other content originating from the podcast creators or their licensors.
We display this content under fair use principles and/or implied license for the purpose of podcast discovery, information, and commentary. We make no claim of ownership over any podcast content, artwork, or related materials shown on this platform. All trademarks, service marks, and trade names are the property of their respective owners.
While we strive to ensure all content usage is properly authorized, if you are a rights holder and believe your content is being used inappropriately or without proper authorization, please contact us immediately at hey@podengine.ai for prompt review and appropriate action, which may include content removal or proper attribution.
By accessing and using this platform, you acknowledge and agree to respect all applicable copyright laws and intellectual property rights of content owners. Any unauthorized reproduction, distribution, or commercial use of the content displayed on this platform is strictly prohibited.