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Rare Disease Day 2013

February 28 marks the sixth international Rare Disease Day. On and around this day hundreds of patient organizations from more than 60 countries and regions worldwide will participate in activities to raise awareness among the general public and decision-makers about rare diseases and their impact on patients’ lives. 

International collaboration among industry, academia, regulatory agencies, and patients is vital if we are to develop effective and accessible therapies for the more than 6,000 rare diseases affecting over 60 million people in Europe and the US alone. 

DIA AND THE RARE DISEASES PATIENT COMMUNITY 

Through DIA’s worldwide conferences and programs, patient representatives have opportunities to develop, strengthen, and support collaborations with policymakers, health professionals, industry representatives, and academia while promoting dialogue and sharing best practices.


DIA and the National Organization for Rare Disorders (NORD). DIA and NORD invite patient organizations and patients to attend the annual US Conference on Rare Diseases and Orphan Products to network with other stakeholders in the rare diseases community. 


Peter L. Saltonstall, President and CEO, National Organization for Rare Disorders (NORD), discusses the future of orphan product development during the 2nd Annual Conference on Rare Diseases and Orphan Products. 

Several sessions at the 2nd Annual US Conference on Rare Diseases and Orphan Products addressed the regulatory aspects of orphan product development, review, and approval.

Read Regulatory Roundup.  pdf  


 

Annual_meetingDIA 2013 49th Annual Meeting

The Annual Meeting is the largest multidisciplinary event that brings together a community of professionals at all levels and across all disciplines in the discovery, development, and life cycle management of medical products. Choose from more than 250 sessions over 22 tracks, including Rare/Orphan Diseases:

View Online Searchable Program | Register Online

DIA 2013 49th Annual Meeting Patient Fellowship Program. The Patient Fellowship Program provides patient representatives with the opportunity to develop, strengthen, and support collaborations among policymakers, health professionals, industry representatives, and academia while promoting dialogue and sharing best practices. DIA is working to ensure that the "voice of the patient' is heard globally in every facet of the discovery, development, and life cycle management of pharmaceuticals, biotechnology, medical devices, and related products.

"My daughter suffers from a rare disease called Mastocytosis. We just found out last summer that I have a version of the same disease called Mast Cell Activation Disorder. There is a medication that is only available in the UK and DIA is helping us get this medication into the US so we can continue to use it.” - Kelli Foster, Patient Advocate, The Mastocytosis Society 

“And for the people that have one of these conditions, they can be life-altering, and in some cases, life-ending, and having that voice for those people and having a group that is willing to listen to us and wants to learn more about it, it’s so meaningful, it’s very hard to describe.” - Daniel Smith, National Dysautonomia Research Foundation


DIA 25th Annual EuroMeeting 2013. This program, now in its eighth year, promotes the participation of representatives of patient organizations at the EuroMeeting. DIA fully supports 22 patient representatives covering their complete travel and accommodation costs plus complimentary admission to the EuroMeeting, and is offering 25 additional patient representatives complimentary registration for the Meeting.