Now that the election is over, rare disease advocates such as the EveryLife Foundation, Global Genes and the National Organization for Rare Disorders (NORD) have an opportunity to help heal the nation by focusing on issues that cut across the political divide. Rare diseases affect patients regardless of their political preferences. It is now up to all Americans to work together as advocates and partner with elected officials to ensure a brighter future for rare disease patients.
Advocates are well-positioned to have a bipartisan impact in 2016 and beyond. The patient community has generated outstanding momentum to help ensure that 21st Century Cures reaches the President’s desk before time runs out this year. This legislation could be a game-changer for the rare disease community and is an opportunity for f for representative of both parties to unite behind this critical legislation. It is in this spirit that the EveryLife Foundation has partnered with Global Genes and NORD to launch a United Rare Disease Day of Action on Tuesday, November 15th.
To learn more, please visit our 21st Century Cures Action Center.
In 2017, rare disease advocates look forward to working with Congress and the Trump Administration to ensure that rare disease patients continue to have a strong voice in Washington, DC.