April is Trisomy awareness month so we want you to hear from one of the most out-spoken patient advocates in this space, Sarita Edwards. Sarita is the co-founder of the E.WE Foundation, a charity with the goal of supporting families with a love

Dr. Scott Ernst & Dr. Femida Gwadry Sridhar- The Global Melanoma Research Network

Jan 19th, 2023 26m 4s

Back in 2013, Dr. Scott Ernst and Dr. Femida Gwadry-Sridhar both recognized some problems with the way people were conducting research for melanoma. Collaboration was lacking and crucial patient data was being siloed and not shared amongst the

Dan Shockley

Nov 11th, 2022 31m

A positive mindset is one of the keys to living a happy life. But maintaining optimism in the face of adversity is much easier said than done. Especially when that adversity comes in the form of a rare medical condition diagnosis. However, our

Tracy Dixon-Salazar

Aug 31st, 2022 33m 8s

Motherhood is one of the greatest experiences in a woman's life, but it comes with many challenges. These challenges only become greater when your child lives with a rare disease. Neuroscientist, geneticist, patient advocate, and Executive Dire

Lori Straus

Jul 26th, 2022 22m 1s

In this episode of "Real Talk, Real-World Data", Joshua is joined by freelance content writer and author Lori Straus. Lori has been writing content in the rare disease space for years and has contributed several articles to Pulse Infoframe. On

Ana Mingorance

Jun 28th, 2022 19m 50s

On the third episode of "Real Talk, Real-World Data", Joshua is joined by Ana Mingorance. Since she was a child, Ana has had the goal of curing a disease. She carried this with her into adulthood and sits down to share some insights she has tak

Dan & Patricia Lewi

Jun 6th, 2022 22m 15s

In the second episode of "Real Talk Real-World Data" our host Joshua Henderson is joined by Dan and Patricia Lewi. Dan and Patricia have become leaders in patient advocacy in the Tay-Sachs community after their daughter Amelie was diagnosed wit

Becky Pender

Apr 6th, 2022 34m

In the debut episode of "Real Talk Real-World Data" our host Joshua Henderson is joined by Rebecca Pender to discuss the rare epilepsy space. Rebeca has a daughter who lives with multiple rare diseases and is also a dedicated Team and Communiti

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