Rare Connection
Rare Connection is a podcast dedicated to rare diseases, undiagnosed conditions, patient advocacy, medical research, and the people working to improve the lives of those living with rare disorders.
Originally launched as Nutrition Equity, the podcast expanded into Rare Connection to reflect its broader mission: sharing the stories, science, and research behind all 10,000+ known rare diseases—not just those related to the Medical Nutrition Equity Act.
Each episode features conversations with patients, caregivers, physicians, researchers, nonprofit leaders, advocates, and biotechnology experts. Together, we explore rare diseases, genetic disorders, newborn screening, clinical trials, emerging treatments, healthcare policy, diagnostic journeys, and the challenges of living with conditions that are often misunderstood.
In medicine, common conditions are often referred to as "horses," while rare diseases are known as "zebras." Although each rare disease affects relatively few people, more than 300 million people worldwide live with a rare disease. Collectively, rare diseases impact more people than many realize, yet they are frequently underdiagnosed, misdiagnosed, or diagnosed only after years of searching for answers.
I host this podcast not only as an advocate, but also as someone living with Homocystinuria (HCU), a rare inherited metabolic disorder. I understand firsthand how isolating a rare diagnosis can be and how important education, research, and community are for patients and families.
Whether you are a patient, caregiver, healthcare professional, researcher, policymaker, student, or simply curious about rare diseases, Rare Connection aims to educate, inspire, and connect people through real conversations and expert insights.
Video episodes are available on YouTube through Rare_Chef, with audio available on all major podcast platforms.
If you have a rare disease, undiagnosed condition, or work in rare disease research, advocacy, or healthcare and would like to be a guest, I'd love to hear from you. Please contact me at joanna.ball41@gmail.com.
Rare Connection is more than a podcast—it's a growing community. Beyond sharing educational interviews, I help connect patients and families with rare disease organizations, Facebook support groups, advocacy groups, clinical trial information, researchers, and others who may be able to provide support or answer questions. Sometimes the most important step is simply helping someone realize they are not alone.
Rare Connection
Nutrition Equity Episode 13: Diabetes Awareness month With Jessica
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In this episode of Nutrition Equity I talk with Jessica, a patient with both Classical Homocystinuria and Diabetes. Jessica will talk about the complexities of dealing with two conflicting conditons. Homocystinuria requires a low protein diet and Diabetes requires you to watch your carbs and sugar intake. While nuts aren't allowed for most on a low protein diet trace amounts like you would find in nut or seed milk are ok. Jessica has a nut allergy and depends on oat milk instead of the nut milks. She also talks about her challenges with the healthcare system and how her diets with Homocystinuria and Diabetes are complete opposites.
Chapter Markers
00:00 Intro
02:55 Diagnosis journey Homocystinuria
08:17 Diabetes diagnosis
11:42 Foods to avoid that many may not know about
14:19 Daily struggles and choices
15:20 Clinical Trial for Homocystinuria
15:57 Diabetes wins the battle over Homocystinuria
20:06 obstacles of getting medical foods & Formula
25:07 Role of the Medical Nutrition Equity Act (MNEA) in Jessica's life
28:09 Advice to others in similar situations
30:16 Finding support & coping mechanisms
33:17 Advice for new diabetes patients
34:38 misconceptions about diabetes & Homocystinuria
37:03 Hopes for the future
38:41 Support Networks that have been helpful
39:49 How you can get involved
41:05 Conclusionhe finds support. #DiabetesAwareness #Homocystinuria #WhyNow4MNEA