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The Importance of Patient Advocates for Orphan Drugs

Posted by | 11:16am on Thursday, April 18, 2013

I attended the World Orphan Drug Congress last week in Washington, DC, and Siren presented the workshop, “A Roadmap for Patient Advocacy Investment.” In the rare disease space, patient engagement is critical to every step of a drug’s development, including: filling clinical trials, getting FDA approval, obtaining reimbursement, getting patients diagnosed and promoting adherence.

Wendy White moderated with presentations from Jamie Ring of Genzyme, a Sanofi Company and Diane Goetz of PTC Therapeutics. Pat Furlong of Project Muscular Dystrophy and Lori Sames of Hannah’s Hope Fund provided the patient advocacy perspective. The event was overflowing with attendees–a mix of representatives from biopharmaceutical companies and advocacy organizations. Liz Donohue from Coordination of Rare Diseases at Sanford (CoRDS) shared her takeaways.

Megan O’Boyle from the Phelan-McDermid Syndrome talked about her highlights.

Lori’s recommendation to other patient advocates on how to work with pharma.

See Siren’s YouTube channel for more videos from the World Orphan Drug Congress including a review of the importance of patient registries.

About Eileen O'Brien

Eileen has more than 16 years of digital healthcare marketing experience. She is an opinion leader on social media and biopharma, and has been invited to speak at industry conferences and quoted in publications.

View other posts from Eileen

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    18 April 2013 at 12:04pm
    Read: The Importance of Pat Advocates for #OrphanDrugs http://t.co/4dBnYlD2qa #OrphanDrug ...
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  • 18 April 2013 at 12:04pm
    RT @ChristianeTrue: RT @eileenobrien: Video highlights from #WODC w/ @HHF4GAN, @Phelan_McDermid & @SanfordCoRDS http://t.co/B5L6I5tIyn ...
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  • 18 April 2013 at 12:04pm
    Read about "The Importance of Patient Advocates for Orphan Drugs" on Siren Song: ...
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  • 18 April 2013 at 1:04pm
    Read about "The Importance of Patient Advocates for Orphan Drugs" on Siren Song: ...
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  • 18 April 2013 at 2:04pm
    Patient advocacy essential for orphan drugs http://t.co/ajvWRxDfyX ...
  • Kyle Knox (@ningen)
  • 18 April 2013 at 10:04pm
    The Importance of Patient Advocates for #OrphanDrugs #raredisease #pharma ...
  • SavingCase (@savingcase)
  • 19 April 2013 at 7:04am
    RT @EileenOBrien: Video highlights from #WODC w/ @HHF4GAN, @Phelan_McDermid & @SanfordCoRDS http://t.co/VlCIkef4qu #raredisease ...
  • @Phelan_McDermid
  • 30 April 2013 at 2:04pm
    RT @EileenOBrien: Video highlights from #WODC w/ @HHF4GAN, @Phelan_McDermid & @SanfordCoRDS http://t.co/VlCIkef4qu #raredisease ...
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