June 15, 2020 /

Family Friday: Advocating for Yourself in Research

Posted 4 weeks ago

Family Friday: Advocating for Yourself in Research

Exploring, understanding, and making decisions about Duchenne research and clinical trials can be very overwhelming. During our June 12, 2020 Family Friday on Facebook Live, we were joined by Dr. Mena Scavina (Nemours Children’s) and Michael Lo Sapio (parent) to discuss navigating Duchenne research and clinical trials as well ways to advocate for your family.

RESOURCES MENTIONED

EXPLORE APPROVED & POTENTIAL THERAPIES

Duchenne research continues to progress, with multiple therapies in clinical trial. Stay up-to-date on the latest progress of drug development in Duchenne.
parentprojectmd.org/pipeline

CURRENT CLINICAL TRIALS

Learn about actively recruiting clinical trials and studies you or your child may qualify for.
parentprojectmd.org/exploretrials

CONSIDERING A CLINICAL TRIAL

If you are considering a clinical trial, we have resources available to help you decide whether or not clinical trial participation is right for you and your family.
parentprojectmd.org/considering-clinical-trial/

JOIN THE DUCHENNE REGISTRY

Once you join The Duchenne Registry and complete your Medical Surveys, the Registry will let you know when you might be a good fit for research studies and clinical trials. Your anonymous Registry data is also shared with researchers to speed the development of new therapies.
duchenneregistry.org

PPMD’s VIRTUAL CONFERENCE

Registration is now open for PPMD’s 2020 Annual Conference Virtual Edition! Though we can’t connect in person this year, there was no way PPMD could let the summer go without hosting our Annual Conference. So this year, we are gathering virtually! From Wednesday, July 22 Saturday, July 25, we will be offering the kind of robust, informative agenda you have come to expect from PPMD over the last 25 years. Take a look at what we have planned so far and register for FREE today!
parentprojectmd.org/conference

Additional questions can be sent to ellen@parentprojectmd.org

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