The Importance of Patient Advocates for Orphan Drugs

April 30, 2013

I attended the World Orphan Drug Congress last week in Washington, DC, and Siren Interactive 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 pharmaceutical companies.

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

Eileen O’Brien has 16 years of interactive healthcare marketing experience. At Siren Interactive, a relationship marketing agency specializing in rare disease therapies, she leads search strategy, analytics, CRM and social media. She is considered a thought leader on social media and pharma, and she was named as one of the top 50 women in healthcare on Twitter.

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