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. 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.

Episode 8 – On location: Global Genes RARE Patient Advocacy Summit

Released Nov 1, 2018

About this episode

This episode is the first in a special series recorded live at the 7th annual Global Genes RARE Patient Advocacy Summit—the largest worldwide gathering of rare disease patients, advocates, and thought leaders.

Guests

Angie Rowe, Christine Von Raesfeld, Amanda Jaksha

First, Angie Rowe, Interim Executive Director of Global Genes, reflects on how exciting it is to spend time at the conference after all of her team’s hard work in bringing it to life. She also talks about how the summit inspires and empowers attendees, newcomers, and veterans alike.

Next, we hear from 2 first-time summit attendees, Christine Von Raesfeld, who was diagnosed with a bleeding disorder called thrombotic thrombocytopenic purpura at the age of 14, and Amanda Jaksha, mother of a child who was diagnosed with CDkl5 deficiency in 2012. After just a few hours at the summit, these women speak about the electricity and camaraderie at this event that make it unique.

Host

Andra Stratton

Andra Stratton is the President and Co-founder of Lipodystrophy United and host of the Rare in Common podcast. When she suggested taking the studio “on the road” from Boston to Irvine, California, to talk to attendees of the 2018 Global Genes RARE Patient Advocacy Summit, we loved the idea, set ourselves up in a mobile studio, and were honored to be on-site—right by the action—to capture so many incredible stories.

Episode 9 – From physician to CEO; always a passion for rare

Released Nov 15, 2018

About this episode

Rare disease is a specialized field. You may wonder how some doctors or executives choose this career path. While Dr. Ed Kaye started out caring for pediatric patients living with rare diseases, he moved into key leadership roles at biopharma companies that develop groundbreaking therapies to treat them. Dr. Kaye shares his unique industry perspective and the important things he has learned from both his successes and failures along the way.

Guest

Dr. Ed Kaye

CEO of Stoke Therapeutics and former CEO of Sarepta Pharmaceuticals, Dr. Ed Kaye’s extensive career in the biotech industry is driven by one thing—his unwavering commitment to patients with rare diseases. Since 2001, Dr. Kaye has been a part of 6 different teams that have had 6 drugs approved for the treatment of rare diseases. And, if he has it his way, he’s not done yet.

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 10 – When a rare disease treatment fails approval, what happens next?

Released Nov 29, 2018

About this episode

This episode is the second in a special series recorded live at the 7th annual Global Genes RARE Patient Advocacy Summit—and an important follow-up to Episode 4, “Taking on Rare as a Family,” in which Justin Hastings spoke about living with familial chylomicronemia syndrome (FCS).

In August 2018, Waylivra® (volanesorsen sodium) was slated to receive final approval from the US Food and Drug Administration (FDA) and become the first-ever therapy specifically for the treatment of FCS. Instead, Akcea Therapeutics, the company that makes Waylivra, received a complete response letter (CRL) from the FDA, rejecting approval of the drug, causing a wave of surprise, shock, and upset for everyone affected. Hear how the FCS community is responding and how it’s working together—stronger than ever—to help Waylivra receive approval in the future.

Guests

Lindsey Sutton and Melissa Goetz

Our guests are co-presidents of the FCS Foundation, an organization that offers information, resources, and support to people living with FCS, along with their caregivers and family members.

Lindsey Sutton was diagnosed with lipoprotein lipase deficiency when she was 5 weeks old, and has faced a lifetime of symptoms, including frequent bouts of pancreatitis, that can come with having extremely high triglycerides associated with the disease. Lindsey shares her candid reaction to the Waylivra delay and what it could mean for her as someone living with FCS.

Melissa Goetz is a mother of 3. Her middle daughter, Giuliana, was diagnosed with FCS when she was 3 weeks old. She experienced pancreatitis and infections in her liver and kidneys soon after, but, for now, remains symptom-free with close management of her triglyceride level through diet. Melissa shares what it’s like, as a parent with high hopes for the availability of a treatment for her daughter’s disease, to deal with the news that Waylivra was not approved.

Host

Andra Stratton

Andra Stratton is the President and Co-founder of Lipodystrophy United and host of the Rare in Common podcast. When she suggested taking the studio “on the road” from Boston to Irvine, California, to talk to attendees of the 2018 Global Genes RARE Patient Advocacy Summit, we loved the idea, set ourselves up in a mobile studio, and were honored to be on-site—right by the action—to capture so many incredible stories.

Episode 11 – “I got here because I asked for help”: coming together in rare

Released Dec 20, 2018

About this episode

This episode is the third in a special series recorded live at the 7th annual Global Genes RARE Patient Advocacy Summit, the largest worldwide gathering of people with rare diseases, advocates, and thought leaders.

When Luke Rosen’s daughter Susannah was diagnosed with a rare, neurodegenerative disease called KIF1A-associated neurological disorder (KAND) in 2016, he quickly learned there was a lack of information and resources for families like his. His desire to be there for his family and search for a treatment for KAND prompted him to leave his acting career behind and forge a new path.

Two years later, as the founder of KIF1A.org and the Associate Director of Patient Engagement at Ovid Therapeutics, Luke has learned that asking for help and creating strong connections in the rare disease community are critical for navigating the challenges that arise after diagnosis.

Guest

Luke Rosen

Luke Rosen is a former television actor, theater actor, and writer turned full-time patient advocate. His daughter Susannah was diagnosed with a mutation of her KIF1A gene when she was 2 years old. Her rare neurogenerative disease has caused her to have a seizure disorder, a movement disorder, and some optic nerve atrophy. There is no cure or treatment for this progressive condition—“yet,” as Luke says. Now, his organization, KIF1A.org, is working to raise awareness and money to accelerate research and discover treatment for every child living with this disease.

Host

Andra Stratton

Andra Stratton is the President and Co-founder of Lipodystrophy United and host of the Rare in Common podcast. When she suggested taking the studio “on the road” from Boston to Irvine, California, to talk to attendees of the 2018 Global Genes RARE Patient Advocacy Summit, we loved the idea, set ourselves up in a mobile studio, and were honored to be on-site—right by the action—to capture so many incredible stories.

Episode 12 – When all the stars align in the fight against ALL

Released Jan 24, 2019

About this episode

When Eve Pallang felt a pain in her ribcage, she first brushed it off as muscle soreness from shoveling snow. The pain continued to spread so she went for an X-ray. The results were normal, but, fortunately, a doctor at the hospital advised her to go for more tests. Ultimately, she received the earth-shattering news that she had acute lymphoblastic leukemia (ALL).

Facing her diagnosis—and all that followed—with the support of her husband and family was critical for Eve. But she had no idea at the start of her journey to remission how being in the right place at the right time would land her in multiple clinical trials that would ultimately save her life.

Guest

Eve Pallang

Soon after she started working as a nurse at the age of 33, Eve was diagnosed with ALL, a highly malignant cancer that usually occurs in children. She became “the patient,” found a match in her brothers for a stem cell transplant, and experienced veno-occlusive disease, one of the procedure’s most serious complications. Today, 3 years into remission, Eve is happy, working as a nurse again, and enjoying life with her husband and recently adopted baby girl.

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 13 – Rare Disease Day: Looking back. Forging ahead.

Released Feb 28, 2019

About this episode

Rare Disease Day marks 1 year of creating Rare in Common podcasts! In honor of this special day, which is celebrated by the rare disease community around the world, we’ve created an episode that highlights some familiar voices from past podcasts and even puts host Andra Stratton in the “guest seat” to answer some important questions.

At the 2018 Global Genes RARE Patient Advocacy Summit, Andra was inspired by the 3 questions posed to everyone in attendance by keynote speaker Rachel Callander, TEDx presenter and author of the award-winning Super Power Baby Project. She explores those questions with our guests and offers her personal answers as well.

Our guests, all of whom have been featured in past episodes, represent an array of rare diseases, a vast collection of experiences, and many incredible stories and insights—all illustrating that as a rare community, we are stronger when we come together. We were honored to speak with these guests at the Global Genes RARE Patient Advocacy Summit a few months ago and are excited to share some special highlights of those conversations on Rare Disease Day.

Episode 14 – “Beautifully heartbreaking”: one mom’s rare and incredible journey

Released Mar 28, 2019

About this episode

From navigating her son Case’s rare diagnosis with the help of her own mother (and a medical diagnosis television show) to being honored at a global summit meeting for patient advocates almost a decade later, Melissa Hogan’s story is raw and riveting. She describes the reality of her son living with mucopolysaccharidosis II, or Hunter syndrome, as “beautifully heartbreaking”—a sentiment that rings true for so many parents raising children with rare diseases.

Guest

Melissa Hogan

When Case was diagnosed 9 years ago, the focus of Melissa’s life abruptly changed. She redirected the skills she had been using in her career as a lawyer and strategic consultant to advocate for her son’s needs and get him into a clinical trial. To help other families of children with Hunter syndrome, Melissa writes about her experiences on a blog, started a nonprofit organization called Project Alive, and has written 2 books. Her incredible efforts were recognized at the Global Genes Patient Advocacy Summit in October 2018, where she was the RARE Championship of Hope Honoree.

Host

Andra Stratton

Andra Stratton is the President and Co-founder of Lipodystrophy United and host of the Rare in Common podcast. When she suggested taking the studio “on the road” from Boston to Irvine, California, to talk to attendees of the 2018 Global Genes RARE Patient Advocacy Summit, we loved the idea, set ourselves up in a mobile studio, and were honored to be on-site—right by the action—to capture so many incredible stories.

Episode 15 – The A, T, G, and C’s of genes: exploring genetics with Dr. Anthony Gregg

Released Apr 25, 2019

About this episode

This episode is the first in a special series recorded live at the 2019 American College of Medical Genetics and Genomics (ACMG) Annual Clinical Genetics Meeting in Seattle. We had the honor of speaking with Dr. Anthony Gregg, the incoming president of ACMG, to get his perspective on what medical genetics brings to the practice of medicine. Dr. Gregg shares the benefits of getting rare genetic disorders diagnosed early, and the many ways in which this knowledge can help families plan and prepare. Dr. Gregg also provides a fun and interesting lesson in genetics that everyone can understand.

Guest

Anthony Gregg, MD

The incoming president of ACMG, Dr. Gregg is an MD, MBA, fellow of the American College of Obstetricians and Gynecologists, fellow of ACMG, and both chair of the department of obstetrics and gynecology and chief of the division of maternal and fetal medicine at Baylor University Medical Center in Dallas.

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 16 – Voices of ACMG: On the floor at the 2019 annual meeting

Released May 9, 2019

About this episode

In this special episode, join the Rare in Common team on the floor at the American College of Medical Genetics and Genomics (ACMG) annual meeting in Seattle. As the team walked around the conference, Andra had the opportunity to chat with members of the genetics community in attendance, from geneticists to genetic counselors to advocates. After speaking with the guests, it’s clear there is a positive outlook for the rare community with the help of advancements in genetics.

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 17 – The hope that comes with a name: the power of a diagnosis

Released May 23, 2019

About this episode

For this third installment of the American College of Medical Genetics and Genomics (ACMG) Annual Clinical Genetics Meeting series, we sat down with Kim LeBlanc of the Undiagnosed Diseases Network (UDN). She walks us through how the UDN helps patients find answers, a diagnosis, and a community, as well as the hope a diagnosis can provide for those living with a rare disease. Listen as Kim explores the journey to diagnosis through UDN, resources and organizations for undiagnosed patients, and the role of genetic counselors in the rare space.

Guest

Kim LeBlanc

A genetic counselor by training, Kim LeBlanc is the associate director of research operations for the UDN Coordinating Center. UDN is a group of clinical and research centers across the United States that work together to solve the toughest medical mysteries. Kim’s team, a part of the Department of Biomedical Informatics at Harvard Medical School, provides support for patients and referring healthcare providers.

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 18 – Connecting the dots in the network of rare

Released Jun 20, 2019

About this episode

In this episode recorded at the American College of Medical Genetics and Genomics (ACMG) Annual Clinical Genetics Meeting, hear from 2 experts in the field of genetics. First, Dr. George Diaz discusses his role as a medical geneticist and pediatrician, the value of connecting families affected by rare diseases, and the impact technological advancements have made in his field. Next, Dr. Katy Phelan shares highlights of her career as a laboratory geneticist—including her discovery of a rare deletion syndrome. She explains why when patients connect, it helps their families and improves her research and understanding of the disease.

Guests

Dr. George Diaz, MD, PhD
A practicing pediatrician, Dr. George Diaz is a professor at the Icahn School of Medicine and the Division Chief of Medical Genetics in the Department of Genetic and Genomic Sciences at Mount Sinai Hospital in New York.

Dr. Katy Phelan, PhD, FACMG
A founding fellow of ACMG, Dr. Katy Phelan is the Director of Cytogenetics at Florida Cancer Specialists and founder of the Phelan-McDermid Syndrome Foundation.

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 19 – Exploring transgenics—the forefront of genetic advancement in rare

Released Jul 18, 2019

About this episode

Did you know that there are benefits to studying human genetic variants in worms or fish? In this fascinating chat recorded at the American College of Medical Genetics and Genomics (ACMG) Annual Clinical Genetics Meeting, Dr. Shula Jaron explains how transgenics gives scientists a simpler way to study human disease genes and mutations in live organisms. You may be surprised to learn that worms and zebrafish play an important role in discoveries in rare.

Guest

Dr. Shula Jaron, PhD

A scientist by training, Dr. Jaron is now the Vice President of Business Development at NemaMetrix, an Oregon-based company that uses transgenics for the purpose of disease research and drug discovery through the use of animal models.

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 20 – Taking back life by tackling diagnosis

Released Nov 21, 2019

About this episode

In the world of rare disease, it can feel impossible to find a diagnosis, let alone a treatment. Onno Faber explains how his interest in science helped him when was diagnosed with a rare disease called neurofibromatosis type 2 (NF2). Listen as he talks about the importance of patient involvement and his dreams for the future of rare disease.

Guest

Onno Faber

Onno Faber is the founder of RDMD, an organization dedicated to finding answers for patients with rare diseases. Diagnosed with a rare disease himself, Faber has taken precision medicine to the next level. Now, he wants to help thousands more.

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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