ONCE UPON A GENE - EPISODE 166

A Focus On Patient Advocacy - Participation In Research and the Importance of an Engaged Patient Advocacy Group with Wendy Kay Chung, MD

Dr. Wendy Kay Chung cares deeply about rare kids and has a profound purpose to make this world a better place. She talks with us about a lot of critical topics helpful for patient advocacy groups working to push things forward and getting things organized. You're going to learn a lot, so be sure to share this episode far and wide. 

EPISODE HIGHLIGHTS

Can you introduce yourself?

I'm a medical geneticist- a doctor who takes care of people with rare genetic conditions. I also do research to try to provide answers and treatments for conditions we don't have answers or treatments for. 

Can you tell us about Simons Searchlight?

Simons Searchlight is an infrastructure that supports individuals with about 178 different rare genetic neuro-developmental conditions. We're using science to come up with answers to give patients hope for the future. Information is distributed to researchers around the world- in academic libraries, laboratories, hospitals and companies working towards treatments. We're trying to make it easier for scientists to do good science and generate better tomorrows. 

Can you clarify the importance of natural history studies for patient advocacy groups?

It's absolutely critical, especially if a group's condition is newer and the natural history isn't known. Natural history is how a condition evolves and changes over the life course without treatment or a cure. We do this because we need to know what things are like without a treatment and compare what happens with a treatment. 

What can a family foundation do with no money to get pharma-ready?

Aggregate your community, get everyone together and stay together as one group. Leverage your power and work together with other resources. Find researchers to work with so they can also leverage some of their resources from federal agencies. Within the community, do an inventory of the parents' skillsets and think as a group how its best to divide and conquer. 

LINKS & RESOURCES MENTIONED

Speak Up Talk Radio 2022 Positive Change Podcast Award Winners

https://www.speakuptalkradio.com/podcast-award-winners/

The Disorder Channel

https://www.thedisordercollection.com/

Simons Searchlight

https://www.simonssearchlight.org/

Guardian Study Nomination Form Request

[email protected]

NIH Clinical Trials

https://clinicaltrials.gov/

Simons Searchlight Studies

https://www.simonssearchlight.org/research/what-we-study/

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