About

The Rare in Common story

The 2017 Emmy-nominated Rare in Common documentary gave people from the rare disease community an opportunity to tell their stories. Today, the storytelling has expanded to the world of audio with the Rare in Common podcast. Whether you watch or listen, prepare to be moved and inspired by those touched by rare disease.

Podcasts

Stories from a rare perspective

Watch the Rare in Common podcast trailer for a glimpse of how we're rethinking what it means to be rare.

Explore below for the latest Rare in Common podcast episodes featuring patients, caregivers, and physicians from the rare disease community.

Episode 1 – Hanging out with zebras

Released Feb 28, 2018

About this episode

Those living with rare diseases refer to themselves as “zebras.” Janis is no exception. Her son Luke has a genetic mutation so rare it’s never been reported before. As her family works toward a diagnosis, she finds support among other zebras like her.

Guest

Janis Creedon

Mother to her young son Luke, who has an undiagnosed rare genetic connective tissue disorder, Janis is an active and passionate fundraiser, advocate, and speaker for the rare disease community.

Host

Andra Stratton

Since her diagnosis of partial lipodystrophy at age 37, Andra has become a voice for her community—first, through the creation of Lipodystrophy United and, now, through public outreach and national awareness campaigns.

Episode 2 – On trial

Released Feb 28, 2018

About this episode

When 2 of Jenn’s children were diagnosed with Duchenne muscular dystrophy (DMD), it changed her life. Since then, she’s fought for access to clinical trials and new treatments and inspired others to join the cause along the way.

Guest

Jenn McNary

Mother to 2 sons who have a rare disease known as DMD, Jenn works with the rare disease community to advocate for patients to get early and compassionate access to treatments that may improve and prolong their lives.

Host

Andra Stratton

Since her diagnosis of partial lipodystrophy at age 37, Andra has become a voice for her community—first, through the creation of Lipodystrophy United and, now, through public outreach and national awareness campaigns.

Episode 3 – Ehlers-Danlos and rare art

Released Feb 28, 2018

About this episode

After years of misdiagnosis by physicians, Patty diagnosed her daughter’s Ehlers-Danlos syndrome through her own independent research. Since then, she’s worked tirelessly to advocate for the rare disease community, inspiring truly rare artwork along the way.

Guest

Patty Weltin

Mother to 2 daughters with Ehlers-Danlos syndrome, Patty is CEO and founder of the Rare Disease United Foundation, the nation's leading rare disease advocacy organization, working on the challenges facing patients at a state and national level.

Host

Andra Stratton

Since her diagnosis of partial lipodystrophy at age 37, Andra has become a voice for her community—first, through the creation of Lipodystrophy United and, now, through public outreach and national awareness campaigns.

Episode 4 – Taking on rare as a family

Released Jun 25, 2018

About this episode

After a decade of frequent bouts of acute pancreatitis, including 30 hospitalizations and many painful episodes at home, it was Justin’s wife Naomi who helped lead their physician to a diagnosis of familial chylomicronemia syndrome (FCS).

Guest

Justin Hastings

Justin is grateful and proud to be taking on FCS as a family with his wife and 3 daughters. As an FCS Foundation team member, Justin extends this sense of family support to help others navigate their FCS journey.

Host

Andra Stratton

Since her diagnosis of partial lipodystrophy at age 37, Andra has become a voice for her community—first, through the creation of Lipodystrophy United and, now, through public outreach and national awareness campaigns.

Episode 5 – The power of siblinghood in rare

Released Jul 24, 2018

About this episode

Gain a deeper understanding of Sturge-Weber syndrome by seeing it through the eyes of 13-year-old Olivia, whose younger brother, Jameson, has the rare neurological disorder. As they balance fun-filled times with the realities of living with a rare disease, these siblings share a bond that’s as powerful and pure as it gets.

Guest

Olivia Melo

Olivia spends most of her days just like any other eighth grader: going to school, doing homework, and playing soccer. But unlike most kids, she has learned a lot about Sturge-Weber syndrome, symptoms such as seizures, and how she can protect and support her brother.

Host

Andra Stratton

Since her diagnosis of partial lipodystrophy at age 37, Andra has become a voice for her community—first, through the creation of Lipodystrophy United and, now, through public outreach and national awareness campaigns.

Episode 6 – Two rare: fighting Marfan and Ehlers-Danlos

Released Aug 30, 2018

About this episode

Diagnosed with both Marfan syndrome and Ehlers-Danlos syndrome, Jon spent years coming to terms with the effects of these rare diseases. As he made the difficult decision to leave his career behind, he uncovered new focus and passion in patient advocacy and educating others about what it’s like to live with rare.

Guest

Jon Rodis

Jon was diagnosed with Marfan syndrome at an early age, and with Ehlers-Danlos syndrome later in life through his co-creation of the Ehlers-Danlos New England support group. Today, he leads and participates in several support, advocacy, and advisory groups, proudly sharing his decades of experience with the rare community.

Host

Andra Stratton

Since her diagnosis of partial lipodystrophy at age 37, Andra has become a voice for her community—first, through the creation of Lipodystrophy United and, now, through public outreach and national awareness campaigns.

Episode 7 – Blood brothers and sisters: the bond of hemophilia A

Released Oct 4, 2018

About this episode

At the age of 2 weeks, Christian was diagnosed with hemophilia A, a rare blood disorder that has some serious risks. Since childhood, Christian and his family have taken on challenges together and have created a rewarding and unbreakable bond with the hemophilia community.

Guest

Christian Mund

Currently a young professional working in Boston, Christian reflects on the only life he’s known: living with hemophilia A. From his “first bleed” to managing infusions as a child and an adult, Christian shares what he has learned along the way.

Host

Andra Stratton

Since her diagnosis of partial lipodystrophy at age 37, Andra has become a voice for her community—first, through the creation of Lipodystrophy United and, now, through public outreach and national awareness campaigns.

Documentary

Witness #RareInCommon

Our 2017 Emmy-nominated documentary, Rare in Common, follows the experiences of rare families: their struggles, their strength, and their hope for the future as they confront the challenges of living with a rare disease.

Video clips

Specialists and procedures

Rare In Common: Specialists and Procedures (Berg, Part 1/2)

Rare In Common: Specialists and Procedures (Berg, Part 2/2)

Rare In Common: Specialists and Procedures (Creedon)

Rare In Common: Specialists and Procedures (McIntyre)

Fighting to be heard

Rare In Common: Fighting to Be Heard (Creedon)

Rare In Common: Fighting to Be Heard (Johnson)

Siblings of rare

Rare In Common: Siblings of Rare (Johnson)

Reactions from others/bullying

Rare In Common: Strangers' Reactions (Stratton)

Educating others

Rare In Common: Educating Others (Dimuccio)

Rare In Common: Living with Dystonia (Part 1/2)

Rare In Common: Living with Dystonia (Part 2/2)

Path to diagnosis

Rare In Common: Path to Diagnosis (Dimuccio)

Rare In Common: Path to Diagnosis (Friedrich)

Rare In Common: Path to Diagnosis (Burton)

Advocacy

Rare In Common: Advocacy (Weltin)

Rare In Common: Advocacy (McNary)

Relationships

Rare In Common: Relationships (Harkin, Part 1/2)

Rare In Common: Relationships (Harkin, Part 2/2)

South By Southwest (SXSW)

South By South West SXSW: The Communities Part 1/6

South By South West SXSW: The Communities Part 2/6

South By South West SXSW: The Communities Part 3/6

South By South West SXSW: The Communities Part 4/6

South By South West SXSW: The Communities Part 5/6

South By South West SXSW: The Communities Part 6/6

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