In part II of this episode, we continue the conversation with a Shelbi Conover, a mother navigating life after her son’s Duchenne muscular dystrophy diagnosis. She shares the moment everything changed, the fear that followed,and how she transformed uncertainty into advocacy. From learning to speak up in medical settings to becoming her son’s strongest voice, this conversation highlights the power of parental advocacy, community, and choosing action overfear. It’s an honest look at what it means to fight for your child, not just with love, but with courage, education, and an unwavering voice.

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

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 conditionor treatment.

Discussions of specific therapies, brands, or treatment approaches do not constitute endorsement by Heritage Specialty Pharmacy. Product information is provided forgeneral 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.

Optional Legal/ Regulatory Disclaimer

This podcast may reference products or services offered by Heritage Specialty Pharmacy. Such references are for informational purposes only and are not intended as an advertisement or solicitation.

Healthcare Disclaimer

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.

Patient/ Guest Disclaimer

Guests or speakers who share personal experiences are sharing their own perspectives. Individual results and experiences may vary. Always consult a healthcare professional before making any medical decisions.

Third Party/ Product Disclaimer

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.

In this episode, we sit down with a Shelbi Conover, a mother navigating life after her son’s Duchenne muscular dystrophy diagnosis. She shares the moment everything changed, the fear that followed, and how she transformed uncertainty into advocacy. From learning to speak up in medical settings to becoming her son’s strongest voice, this conversation highlights the power of parental advocacy, community, and choosing action over fear. It’s an honest look at what it means to fight for your child, not just with love, but with courage, education, and an unwavering voice. 

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

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.

Optional Legal/ Regulatory Disclaimer

This podcast may reference products or services offered by Heritage Specialty Pharmacy. Such references are for informational purposes only and are not intended as an advertisement or solicitation.

Healthcare Disclaimer

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.

Patient/ Guest Disclaimer

Guests or speakers who share personal experiences are sharing their own perspectives. Individual results and experiences may vary. Always consult a healthcare professional before making any medical decisions.

Third Party/ Product Disclaimer

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.

Blood donation is more than a kind gesture — it’s a lifeline.
In this episode of Rare AF, we explore why blood donation is critical for patients living with rare diseases and how a single donation can directly impact treatment, survival, and quality of life. From real patient needs to the behind-the-scenes realities of care, this conversation highlights why donors play such a vital role in the rare disease community — and how everyday actions can make an extraordinary difference. Join the effort during Blood Donation Month and donate today.

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

Where to Donate? 

AABB: www.WhereToDonateBlood.org; +1.301.907.6977  

America’s Blood Centers: www.AmericasBlood.org; +1.202.393.5725  

American Red Cross: www.RedCrossBlood.org; +1.800.RED CROSS (+1.800.733.2767) 

Donate Blood | Find a Local Blood Drive | American Red Cross 

Donate Blood - Community Blood Center of Greater Kansas City (CBC) 

Plasma Donation USA | Find Plasma Donation Centers Near You 
Find a Plasma Donation Center Near You | Octapharma Plasma Centers 

Plasma donation at KEDPLASMA - KEDPLASMA 

Find A Plasma Donation Center - Grifols 

Find a Plasma Donation Center Near You | CSL Plasma 

Find a Plasma Donation Center Near You | BioLife Plasma Services 

Resources

Blood products: Blood donation 

Blood safety and availability 

Facts About Blood Supply In The U.S. | Red Cross Blood Services 

Search Publications | NHLBI, NIH 

Ensuring a Safe and Sufficient Global Blood Supply | New England Journal of Medicine 

Healthcare Disclaimer

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.

Third Party/ Product Disclaimer

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.

In this episode we explore why PX is a critical part of rare disease care—not an afterthought. Joined by special guest, Shannon Schulz, the conversation dives into what PX really means, how empathy and trust impact outcomes like adherence and readmissions, and how organizations can measure and improve experience without losing the human connection.

Watch and listen to new episodes of RareAF and follow us on Social Media: https://linktr.ee/RareAFpodcast

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.

References

 https://pubmed.ncbi.nlm.nih.gov/39403289/

https://www.ahrq.gov/cahps/quality-improvement/improvement-guide/improvement-guide.html  

https://www.ahrq.gov/cahps/surveys-guidance/home/index.html  

 https://www.ahrq.gov/cahps/quality-improvement/improvement-guide/2-why-improve/index.html

https://www.ahrq.gov/cahps/about-cahps/patient-experience/index.html  

https://edhub.ama-assn.org/steps-forward/module/2702560  

https://chapinc.org/blog-news/perception-is-patient-reality-experience-vs-satisfaction/

https://www.healthcareittoday.com/2025/05/13/seeking-a-seamless-patient-experience-at-the-beryl-institute/

https://jamanetwork.com/journals/jama-health-forum/fullarticle/2834514

https://pmc.ncbi.nlm.nih.gov/articles/PMC6664367/

https://www.pslhub.org/learn/patient-engagement/how-to-engage-for-patient-safety/nhs-improvement-patient-experience-improvement-framework-june-2018-r548/

https://knowledgehub.health.gov.za/system/files/elibdownloads/2022-06/PEC%20SURVEY%20GUIDELINE%20APPROVED.pdf

https://www.qualtrics.com/articles/customer-experience/patient-experience/

https://www.relias.com/blog/patient-experience-vs-patient-satisfaction-whats-the-difference

https://theberylinstitute.org/defining-patient-experience/  

https://theberylinstitute.org/patient-family-advisors/  

 https://webmdignite.com/blog/how-patient-experience-different-patient-satisfaction  

Episode three of RareAF: Advocacy & Facts, In episode three of Rare AF, we celebrate the holidays while shining a light on resources that support the rare disease community. This episode explores the realities of the season and where to find help when it’s needed most.

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.

Resource Checklist: 

https://heritagebiologics.com/wp-content/uploads/2025/12/resourcechecklist.pdf

 Rare Disease Specific 

• National Organization for Rare Disorders (NORD) — The oldest and most comprehensive U.S. rare-disease nonprofit, providing patient assistance programs (medication, diagnostics, caregivers support), a rare-disease database (over 1,200 conditions), and connections to specialized treatment “Centers of Excellence.” Rare Disease Community - National Organization for Rare Disorders 

• PAN Foundation (Patient Access Network Foundation) — Helps patients (including those with rare diseases) by providing financial assistance for out-of-pocket healthcare costs, advocacy, and education. PAN Foundation - Patient financial assistance, advocacy, and education 

• Ben's Friends — Online peer-support communities for people living with rare diseases or chronic illnesses (and their caregivers). Offers community, connection, support, and shared experience. Patient Communities for People with Rare Diseases 

• Take Part Foundation — Focuses especially on children with rare or undiagnosed diseases; supports research and raises awareness. Take Part Foundation 

• Serenely Guided Foundation — Provides resources for patients, caregivers, and families affected by rare diseases, including support around wellness, nutrition, patient navigation, and awareness. Rare Diseases Support | Serenely Guided Foundation In conjunction with Mom’s Meals 

• GARD (Genetic and Rare Diseases Information Center) 

• Every Life Foundation 

• The Hope Project for Kids 

• Hope Kids 

• Rare Diseases Clinical Research Network 

• Take Part Foundation 

• RareKC – Look for local organizations for less competition 

• MGA/Hope for Hemophilia/CureDuchenne- Look for disease specific organizations 

• Accessia Health 

• Rare Diseases International- For listeners outside of US 

• Caregiver Action Network- For rare disease caregiver support/resources 

General Assistance 

Organization / Resource | What they offer / Why they help 

United Way | Works across the U.S. to strengthen communities — aiding with health, education, financial stability, childcare, crisis support, and more. United Way | United Way Worldwide 

Feeding America  | The nation’s largest hunger-relief network: runs 200+ food banks, helps with food insecurity via pantries, shelters, and community-based agencies. Donate to Feeding America | Feeding America 

Volunteers of America (VOA) | Offers affordable housing and other supportive services to low-income individuals, families, seniors, veterans, people with disabilities, and those experiencing homelessness. Home Page - Volunteers of America 

Family Promise | Helps families (especially with children) who are homeless or at risk of homelessness through emergency shelter, transitional housing, mentoring, case management, childcare, and financial-literacyprograms. Home - Family Promise 

The Salvation Army (in the U.S.) | Provides emergency shelter, transitional living, support for homelessness, food, utility and rent/financial assistance, and other basic-needs support. Location Search | The Salvation Army USA 

Episode two of RareAF: Advocacy & Facts, Brian and Amanda break down what a specialty pharmacy really is—and why it should feel like an extension of your care team, not just a place that ships medication. They talk through how specialty pharmacies coordinate between providers, insurers, manufacturers and patients; monitor side effects and outcomes; and help navigate financial resources and stubborn insurance denials. You’ll also hear practical tips on self-advocacy, what you should expect from your specialty pharmacy, and how to find a team that supports your whole life, not just your 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 Diseases: Although Limited, Available Evidence Suggests Medical and Other Costs Can Be Substan…
• Cost of Rare Diseases: The Trillion-Dollar Impact | RareDisease.net

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

For the ones navigating the rare. For the caregivers, the advocates, the warriors. This podcast is for you.
Rare AF - Advocacy & Facts... coming soon.