ProQR Talks episode 1 "Accessible information in an isolated time" with Molly Watt, Rebecca Alexander and host Andy Bolan. Recorded on March 26, 2020.

These series of online talks aim to breakdown some of the harder topics we tackle in healthcare. We will do this by bringing together some of the best speakers from across the inherited retinal community. The talks are hosted by Andy Bolan, who is Associate Director, Patient & Medical Community Engagement at ProQR Therapeutics.

In this episode we discuss the importance of accessible information in this COVID-19 era and the challenges that come with isolation. Both Molly and Rebecca bring their own angles to the virtual table as Molly is a web accessibility consultant and Rebecca is a psychotherapist. Both women live with Usher Syndrome, an inherited disease causing combined blindness and deafness and are part of ProQR's Global Patient & Caregiver Steering Committee.

More on Molly Watt:
Molly Watt is a tech/web accessibility and usability consultant, motivational speaker, children’s author, illustrator, blogger, International ambassador and advocate for those living with challenges.
https://www.mollywatt.com

More on Rebecca Alexander:
Rebecca Alexander is an author, psychotherapist, group fitness instructor, advocate, and extreme athlete who was born with Usher syndrome type III, and has been simultaneously losing both her sight and hearing since she was a teenager.
https://www.rebalexander.com 

Mentioned in this episode:
Molly's article about accessible content during the corona virus pandemic: 
https://www.wearesigma.com/news/advice-on-sharing-accessible-content-during-the-coronavirus-pandemic/
Eye on the Future Forum (EFF) - Annual event that brings together key stakeholders in developing therapies for inherited retinal diseases:
https://eyeonthefutureforum.com/

This episode is also available on YouTube: https://youtu.be/DQG55Nvm7CM

ProQR Therapeutics is biotech company that develops RNA therapies for inherited retinal diseases, with a high need for new medicines, like Leber's congenital amaurosis, Usher syndrome and autosomal dominant retinitis pigmentosa. Learn more on https://www.proqr.com/

ProQR Talks episode 1 "Accessible information in an isolated time"

ProQR Talks episode #2 “Why is the patient perspective in research important?” featuring Francesca Diodati & Laura Brady, hosted by Andy Bolan. Recorded in May, 2020. These series of online talks aim to breakdown some of the harder topics we tackle in healthcare. We will do this by bringing together some of the best speakers from across the inherited retinal community. 
 
The talks are hosted by Andy Bolan, who is Associate Director, Patient & Medical Community Engagement at ProQR Therapeutics. 

In this episode we discuss the crucial role of the patient perspective in research and how it really makes an impact from protocol development to clinical trial participation. Both Francesca and Laura bring their own perspectives to the virtual discussion. Francesca is a avid information specialist and Laura is a passionate patient advocate. Both bridge the research and patient community worlds, driving forward the importance of education and awareness in all stages of the clinical development process. 

Francesca based in Parma, Italy, majored in simultaneous interpreting, but has been working at the University Hospital of Parma for 20 years, 15 of which have been in the Research and Innovation Unit. Living with the genetic eye condition Leber Congenital Amaurosis Type 10, she has a Master’s in research methodology, and works as an information specialist, contributing to the writing of study protocols and scientific publications. 

Laura Brady is the Head of Research at Fighting Blindness Ireland, she completed a degree in Biochemistry at Trinity College Dublin followed by a PhD in Neuroscience. She is currently a Board of Director of the Health Research Charities Ireland. Laura works closely with the clinical and academic community as part of the Target 5000 programme, which provides a clinical and genetic diagnosis to everyone in Ireland with an inherited retinal degeneration. 

ProQR is a proud partner of Fighting Blindness Ireland, and more information can be found here: https://www.fightingblindness.ie/

This episode is also available on YouTube: https://youtu.be/n4KIzIIKBro

ProQR Therapeutics is biotech company that develops RNA therapies for inherited retinal diseases, with a high need for new medicines, like Leber's congenital amaurosis, Usher syndrome and autosomal dominant retinitis pigmentosa. Learn more on https://www.proqr.com/

ProQR Talks episode 2 “Why is the patient perspective in research important?”

ProQR Talks episode #3 "Empowering the IRD community with knowledge of their genetic diagnosis" featuring Kari Branham and Ben Shaberman. 

Recorded in September, 2020. These series of online talks aim to breakdown some of the harder topics we tackle in healthcare. We will do this by bringing together some of the best speakers from across the inherited retinal community. The talks are hosted by Andy Bolan, who is Associate Director, Patient & Medical Community Engagement at ProQR Therapeutics. 

In this episode we discuss the crucial role of a genetic diagnosis for someone with an inherited retinal disease or IRD. Bringing both the genetic counselor and patient advocacy perspectives in this podcast, we aim to show the empowerment an individual can have from the deep knowledge of their genetic condition and what to do with that information.

Kari Branham is a Clinical Assistant Professor and genetic counselor at the University of Michigan’s Kellogg Eye Center. She has worked as a genetic counselor at the Kellogg Eye Center for nearly 18 years. In this position, she provides clinical genetic counseling for patients affected with inherited retinal diseases, pediatric eye diseases, and other inherited eye conditions.

Ben Shaberman is the Senior Director, Scientific Outreach and Community Engagement, Foundation Fighting Blindness. For more than 15 years, Ben has been reporting on retinal research for all of the Foundation’s electronic and print publications. Ben also enjoys working with constituents one-on-one to help them understand their retinal disease and the research underway that may benefit them.

ProQR is a proud partner of the Foundation Fighting Blindness, and more information can be found here: https://www.fightingblindness.org.

Learn more about the 'Open access genetic testing' program that provides free genetic testing for people that are diagnosed with an IRD in the US: https://www.fightingblindness.org/ope...

This ProQR Talks podcast is also available on Youtube: https://youtu.be/CG3MHWI7Dm4

ProQR Therapeutics is biotech company that develops RNA therapies for inherited retinal diseases, with a high need for new medicines, like Leber congenital amaurosis, Usher syndrome and autosomal dominant retinitis pigmentosa. Learn more on https://www.proqr.com

ProQR Talks episode 3 "Empowering the IRD community with knowledge of their genetic diagnosis"

We are ProQR, a biotechnology company dedicated to changing lives by developing RNA therapies for severe rare and common diseases. We focus on advancing our proprietary Axiomer RNA-editing platform technology.