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Webinar: Benefit/Risk Survey Results

Event Details

Webinar: Benefit/Risk Survey Results

Time: June 12, 2013 from 1pm to 2pm
Location: Online Webinar- Eastern Time Zone
Website or Map: http://www.readytalk.com/
Phone: 866.740.1260 -- Access code: 9449985
Event Type: webinar
Organized By: PPMD
Latest Activity: Jun 12, 2013

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Event Description

PPMD launched an important program– Benefit/Risk in Duchenne Therapies– in late 2012. We have collected meaningful data about the Duchenne population, in the hopes of advancing the development of new treatments.

Join the webinar to learn about: 

  1. Parent survey on treatment preferences and risk tolerance: hear a summary of what we’ve learned about priorities, worries, and risk tolerance from 119 participants
  2. “Tell your story” about Duchenne and potential treatments: learn about the stories we are sharing with the FDA, submitted by families like yours
  3. PPMD’s white paper on FDA’s benefit/risk determination: making the case for a different way to weigh benefits and risks for rare, progressive disorders
  4. Benefit risk considerations in rare disease- how these differ from other diseases
  5. How what we are learning about Duchenne can be used as a model for other rare diseases

All of these efforts are designed to make our case with the FDA—an informed case, supported by data, research, and your stories.  Join Holly Peay (Vice President, Outreach and Education) and Tim Fransen (Principal, FaegreBD Consulting) as we describe PPMD’s efforts and how we continue to work with the FDA.

To Participate:

  1. Visit ReadyTalk.com and use participant code 9449985. (Be sure to test your computer beforehand)
  2. Audio Dial-In Information:
  • U.S. & Canada: Dial 866.740.1260 and use the Access Code 9449985
  • Outside the U.S. and Canada: Lookup your number

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