Washington, D.C., February 26, 2018—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, last week joined 125 rare disease patient organizations in sending a letter to Medicaid Directors all across the country highlighting the importance of Medicaid formulary access for rare disease patients.
With this letter, it is our hope to start a dialogue with Medicaid Directors regarding ways to interact with patient organizations and rare disease experts in order to improve patient access to innovative new medicines.
We are extremely grateful to all those organizations that joined us and lent their voice. With many states seeking to make changes to their Medicaid program through Section 1115 waivers, it is crucial to continue working together to make the voices of the rare disease community heard.
To view or share an example of the letter, please click here.