US Conference on Rare Diseases and Orphan Products: The New Era in Health Care; Challenging Times Ahead

The One Meeting For all Stakeholders in the Rare Disease/Orphan Product Community
This year, the third annual meeting of stakeholders in the rare disease community comes at an opportune time.  Two new laws – the Affordable Care Act and the FDA Safety and Innovation Act – are being implemented.  Together, these laws will shape the future for the rare disease community for years to come.

At this Annual Meeting, all stakeholders in the rare disease community - patients, patient organizations, researchers, drug and device companies, investors, thought leaders and government – meet to focus on rare diseases and orphan product research, development and access.  Previous meetings brought together more than 300 stakeholders. This year's event promises even more.

Topics to be covered include the implementation of both ACA and FDASIA; and how increased collaboration among the patient community, government and industry is driving advances in the rare disease community.  The meeting will include four major themes:

• Research & Regulation
• Access and Reimbursement
• The Role of the patient in the research and regulatory process
• The Implementation of the Affordable Care Act

The format of the meeting includes both plenary and smaller group sessions. High-level plenary sessions will open a collaborative dialogue among leading researchers, company officials, investors, patient organizations and government leaders. Smaller group sessions are organized around four central themes: Research & Regulation; Access and Reimbursement; The Role of the patient in the research and regulatory process; The Implementation of the Affordable Care Act. In addition, there will be a significant poster session that will highlight the latest research, and opportunities for attendees to schedule time to meet one on one with key leaders in the rare disease community.

Co-Sponsored with National Organization for Rare Disorders (NORD)

Patient Organizations/Patients are invited to attend the US Conference on Rare Diseases and Orphan Products at a reduced registration fee of $200. 

Please submit a registration form to 215.442.6199

Questions: Contact Carrie Dunn at the DIA office by telephone 215.442.6181 or email Carrie.Dunn@diahome.org

• Researchers from academia and drug and device companies
• Patient organizations and those interested in creating one
• Senior managers from drug and device companies interested in rare diseases
• Investors focused on the future of orphan product development
• Policy experts who are concerned about federal or state policies that affect patients with rare diseases
• Providers of services to the rare disease community, including insurance providers and healthcare professionals
• Government officials responsible for rare disease research and orphan product oversight