May 22, 2020
Today’s episode is an interview with Patty Weltin, Founder and CEO of Beyond the Diagnosis. I invited Patty on the podcast because she is an advocate for individuals and families living with rare diseases, and she has a unique way of using art to educate others about rare diseases - also known as orphan diseases.
Links and info mentioned in this episode
- Website: https://www.beyondthediagnosis.org
- Email: Pweltin@beyondthediagnosis.org
- LinkedIn (Patricia Weltin): https://www.linkedin.com/in/patricia-weltin-b5b93944/
- LinkedIn (Beyond the Diagnosis) https://www.linkedin.com/company/beyond-the-diagnosis/about/
- Twitter: https://twitter.com/BeyondtheDx
- Facebook: https://www.facebook.com/BeyondTheDx/
- Instagram: @BeyondtheDiagnosis
- Rare Disease Day was 2-29-20 (Next is 2-28-21) https://www.rarediseaseday.org
- Ronald McDonald House https://www.rmhc.org
- According to Patty, rare diseases in the US are diseases that affect fewer than 200,000 people. There are 30 million people in the US living with a rare disease; half are children (15 million). 5 million of those children will not live past their 5th birthday due to a lack of treatment.
Patty Weltin Bio
Patty Weltin is the CEO and Founder of the Beyond the Diagnosis. She is the mother of two children with Ehlers-Danlos Syndrome, a rare disease. Patty began working in this space by creating a new business model of working by state. She is from Rhode Island. Her award winning work in state-level advocacy grew to national advocacy efforts. Today, Patty proudly works to successfully use art as a powerful tool to create awareness and innovation into orphan and neglected diseases.
Beyond the Diagnosis background info
Beyond the Diagnosis unites art and science. It began working on a project to increase research and raise awareness of rare diseases within the medical community through art.
Professional artists paint portraits of children living with a rare disease. The portraits then become part of a traveling exhibit for medical schools, research institutes and hospitals. This exhibit has also touched the hearts and minds of the general public. Since the debut, Beyond the Diagnosis has visited the NIH, Broad Institute, Hofstra Medical, Harvard Medical, the FDA and many more.
According to beyondthediagnosis.org, there are 7,000 rare diseases. Rare diseases became known as orphan diseases because drug companies were not interested in adopting them to develop treatments. (Source: beyondthediagnosis.org and https://rarediseases.info.nih.gov/diseases/pages/31/faqs-about-rare-diseases). Less than 5% of all orphan diseases have a treatment. (Source: beyongthediagnosis.org) There are no cures. People living with orphan diseases experience long diagnosis times, few medical experts, no treatments, financial hardship, and emotional stress.
The Beyond the Diagnosis art exhibit’s focus is the orphan disease patient. Artists have donated their time and talents to paint orphan disease patients for this groundbreaking exhibit. Each portrait represents a single orphan disease. The goal of Beyond the Diagnosis is to put a face to all 7,000 orphan diseases. This beautiful exhibit is traveling to medical schools, research institutes and hospitals around the globe encouraging the medical community to look “beyond the diagnosis” to the patient.
Art has been used for thousands of years to successfully convey a message, whether it be a story or a glimpse into the human spirit. Art not only leaves a powerful and lasting visual imprint but it also creates a unique connection for the viewer.
About the art and the artists for Beyond the Diagnosis
- The arts are powerful. According to Patty, you can change the world through art.
- Beyond the Diagnosis has ~120 portraits.
- Artists create portraits of a child using 3-5 photos. Photos are supplied by the family. Artists also use information from the child’s bio, blogs, and social media.
- Artists are volunteers from all over the world: USA, UK, Chile, India, Poland, Bali, Ireland, Pakistan, and more. To learn more, visit https://www.beyondthediagnosis.org/artists.
- The names of rare diseases can be intimidating. Putting a face to the name humanizes the disease. To view the Rare Disease Database, visit https://rarediseases.org/for-patients-and-families/information-resources/rare-disease-information/.
- Patty feels fortunate that the art community has adopted the rare disease community.
- The best thing for Patty personally is meeting the artists and the families.
- The best thing for the rare disease community is being able to show children affected by rare diseases as human beings first and not as their disease. That is very apparent in the art exhibit. The styles of the portraits by the artists are all different too. Every child is different, just like every portrait is different.
Other highlights from the interview
- The first exhibit ever was at Brown University Medical School in Rhode Island.
- The second was at Harvard Medical School and had great press coverage, which helped get the word out and lead to repeat visits.
- Beyond the Diagnosis will be traveling internationally after the COVID-19 pandemic ends.
- Patty’s daughter Olivia, who has Ehlers-Danlos Syndrome, got a perfect score on her SAT (1600)!
- Parents of individuals with rare diseases are extraordinary. They raise money [millions of dollars] and drive research.
- Learning about a rare disease can be like learning a new language. It has its own terminology. It is definitely possible to educate yourself as a parent.
- Funding is the #1 challenge Beyond the Diagnosis faces.
About the logo for Beyond the Diagnosis
In medical schools, med students are taught, “When you hear hoof beats, think ‘horses,’ not zebras.” Rare diseases are like zebras. Educating med students and healthcare professionals about rare diseases early in their careers improves awareness about rare diseases and ultimately benefits individuals with rare diseases.