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Welcome to RareAF: Real Talk for Rare Disease
Episode one dives into the who and the why behind the podcast. Hosted by Brian, a rare disease patient and advocate, and Amanda, seasoned rare-disease nurse and educator. RareAF brings together lived experience, expert insight, and honest discussion about the challenges millions face every day.
Each episode explores topics that matter—diagnosis delays, navigating insurance, treatment options, financial burden, mental health, caregiver realities, and the isolation so many feel. We highlight expert voices, patient stories, and credible information to help listeners feel informed, empowered, and less alone.
Whether you're living with a rare disease, supporting someone who is, or working in the healthcare space, RareAF is here to amplify voices, share resources, and build a stronger, more connected community.
New episodes dive into everything from women’s health and bleeding disorders to clinician-led care, specialty pharmacy, quality of life, and beyond.
You’re not alone. Your story matters. And together, we can move the needle for rare disease.
Watch and listen to new episodes of RareAF every month and follow us on Social Media for all the best moments from the show:
https://linktr.ee/RareAFpodcast
You can also listen to new episodes Spotify, Youtube or Apple Podcasts.
Disclaimer
The views expressed in this podcast are those of the speakers and do not necessarily reflect the views of Heritage Specialty Pharmacy. This content is provided for informational purposes only and should not be relied upon as professional medical advice. All statements are made as of the date of recording and are subject to change.
This podcast is for informational and educational purposes only and is not intended to provide medical advice or to replace the guidance of a qualified healthcare professional. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition or treatment.”
Discussions of specific therapies, brands, or treatment approaches do not constitute endorsement by Heritage Specialty Pharmacy. Product information is provided for general awareness and may not be appropriate for all individuals.
Mention of any specific product, company, or organization does not imply endorsement or affiliation by Heritage Specialty Pharmacy. Any trademarks or brand names mentioned are the property of their respective owners.
Resources:
- Rare Disease Facts and Statistics | NORD
- https://www.definitivehc.com/blog/top-rare-diseases
- https://www.genome.gov/FAQ/Rare-Diseases
- https://www.gao.gov/products/gao-22-104235
- https://raredisease.net/cost
- https://ojrd.biomedcentral.com/articles/10.1186/s13023-022-02299-5
View all episodes
By RareAFEpisode one dives into the who and the why behind the podcast. Hosted by Brian, a rare disease patient and advocate, and Amanda, seasoned rare-disease nurse and educator. RareAF brings together lived experience, expert insight, and honest discussion about the challenges millions face every day.
Each episode explores topics that matter—diagnosis delays, navigating insurance, treatment options, financial burden, mental health, caregiver realities, and the isolation so many feel. We highlight expert voices, patient stories, and credible information to help listeners feel informed, empowered, and less alone.
Whether you're living with a rare disease, supporting someone who is, or working in the healthcare space, RareAF is here to amplify voices, share resources, and build a stronger, more connected community.
New episodes dive into everything from women’s health and bleeding disorders to clinician-led care, specialty pharmacy, quality of life, and beyond.
You’re not alone. Your story matters. And together, we can move the needle for rare disease.
Watch and listen to new episodes of RareAF every month and follow us on Social Media for all the best moments from the show:
https://linktr.ee/RareAFpodcast
You can also listen to new episodes Spotify, Youtube or Apple Podcasts.
Disclaimer
The views expressed in this podcast are those of the speakers and do not necessarily reflect the views of Heritage Specialty Pharmacy. This content is provided for informational purposes only and should not be relied upon as professional medical advice. All statements are made as of the date of recording and are subject to change.
This podcast is for informational and educational purposes only and is not intended to provide medical advice or to replace the guidance of a qualified healthcare professional. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition or treatment.”
Discussions of specific therapies, brands, or treatment approaches do not constitute endorsement by Heritage Specialty Pharmacy. Product information is provided for general awareness and may not be appropriate for all individuals.
Mention of any specific product, company, or organization does not imply endorsement or affiliation by Heritage Specialty Pharmacy. Any trademarks or brand names mentioned are the property of their respective owners.
Resources:
- Rare Disease Facts and Statistics | NORD
- https://www.definitivehc.com/blog/top-rare-diseases
- https://www.genome.gov/FAQ/Rare-Diseases
- https://www.gao.gov/products/gao-22-104235
- https://raredisease.net/cost
- https://ojrd.biomedcentral.com/articles/10.1186/s13023-022-02299-5