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
Palliative care with Anne Front LMFT from California
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What’s the difference between palliative care and hospice? Why is palliative care still misunderstood—and how can it support people with cancer, rare diseases, and other serious conditions long before end-of-life?
In this powerful episode of Rare Connection, host Joanna Ball welcomes Ann, a licensed psychotherapist, breast cancer survivor, and caregiver to her husband who is living with metastatic prostate cancer. Anne is also the clinic manager and palliative care social worker for the Motion Picture Television Fund, where she supports members of the entertainment industry through emotional and practical challenges.
Together, they discuss:
What palliative care really means (and how it differs from hospice)
The emotional rollercoaster of becoming an “emerging caregiver”
Panic, anxiety, and anticipatory grief in the face of serious illness
How rare disease and cancer communities can benefit from early palliative support
Why storytelling and digital advocacy matter—on TikTok and beyond
📲 Follow Anne on TikTok: @annefrontlmft
🧠 Learn more about the Motion Picture Television Fund: https://mptf.com
💬 Comment below if this conversation resonates with you.
📩 Send me a text using the link in the show notes if you're listening to the audio version.
🔔 Don’t forget to subscribe to Rare Connection and my YouTube channel, Rare Chef, for more real conversations with rare disease warriors, caregivers, and medical professionals.
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Chapter Markers
00:00 Welcome
00:18 Today's Topic
00:35 Introducing Anne Front LFT
01:22 What is covered in this episode
01:36 Emotional content disclaimer
01:58 Anne's Journey
04:18 Anne's Cancer Diagnosis
05:19 Life During COVID
06:59 How Telehealth helps
07:42 Palliative Care Vs Hospice
11:32 Palliative Care has a full team
13:23 Misunderstanding palliative care
15:30 Benefits of palliative care for a condition that isn't terminal
00:18:00 Back and fourth between Hospice and palliative care
19:35 dealing with grief
23:37 Emerging Caregiver
4:56 Advanced directives
00:25:00 Maintaining Safety
00:25:45 caregiver support
26:32dealing with caregiver burnout & self care
27:37 support groups & hobbies
29:18 Keeping up with medical appointments
30:17 Asking for Help
32:56 Anne's Role at the Motion Picture Television Fund
34:38 Anne's TikTok Vlog
36:02 TikTok feedback
36:56 understanding Palliative care
38:38 Why it is important to talk about your feelings
39:02 Finding palliative care in your area
39:55 conclusion