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Wednesday, September 28, 2011

DIA conference on Rare Diseases and Orphan Drugs : Washington 11-13 October


The Drug Information Association is holding a conference in Washington DC this October 11-13 on Rare Diseases and Orphan Products.

Committee's Message

The Rare Diseases and Orphan Drugs Summit 2011 is the first annual program representing a collaboration among academic researchers, clinical researchers, pharmaceutical and biotechnology companies, regulatory and health agencies, patient organizations, payors and venture capital/private equity concerns to address the need for effective therapies for rare diseases. The Summit will provide a forum for all participants to share of state-of-the-art knowledge and to explore issues and needs from multiple perspectives. Through these dialogs, we hope to facilitate accelerated development of new therapies and improved access to these and existing therapies for rare diseases.

The goals of the program are to:

Provide education and updates on regulatory requirements and clinical trial issues relevant to rare disease research
Examine and discuss the changing and future orphan drugs landscape from the US and other regional regulatory perspectives
Discuss strategies for successful development, approval, authorization, and reimbursement of orphan drug products
Explore the benefits, approaches, and opportunities for patient partnerships in rare disease therapy development
Engage in open dialogs about challenges and concerns for rare disease treatment development
Encourage and Improve interactions among stakeholders across the full spectrum of the rare diseases community
— Peter L. Saltonstall, Wayne L. Pines, Deborah Dolan, Diane Edquist Dorman, & Trent McLaughlin

Survey for the conference

The conference has an online survey for people with rare disorders and will be drawing attention to the survey at the conference. You can fill out the survey on their special website


Systemic body odors are probably not that rare a disorder, but at the moment they are regarded as such, so this is a chance to show how common a problem it is. Then we can move on from it being classed a rare disorder.

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