Cure AHC Attending DIA NORD Rare Disease Summit
Despite the government shutdown, this critical meeting that DIA/NORD organize annually will go on as scheduled.Â The One Conference For all Stakeholders in the Rare Disease/Orphan Product Community
This year, the third annual conference of stakeholders in the rare disease/orphan product community comes at an opportune time. Two new laws â€“ the Affordable Care Act and the FDA Safety and Innovation Act â€“ are being implemented. Together, these laws will shape the future for the rare disease/orphan product community for years to come.Â In addition, this year marks the 30thÂ anniversary of the Orphan Drug Act, as well as, the 30thÂ anniversary of NORD (National Organization for Rare Disorders).
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
Cure AHC’s own Jason Albert will attend this important conference.Â We are grateful for his willingness to represent us, network with these key stakeholders, and keep awareness of alternating hemiplegia of childhood in the minds of those who may help us reach our goals. To see the agenda, click HERE. Â Stay tuned for updates!