All About the Rare Action Advocacy Workshop

The Greenwood Law Firm had the honor of attending the Texas Rare Action Network Advocacy Workshop on Friday, April 20, 2018. It was an amazing opportunity to learn more about the wide range of resources provided by the National Organization for Rare Diseases (“NORD”) and the local, grassroots efforts to enact legislative changes that will have a positive impact on people with rare diseases in Houston and all over Texas. This workshop demonstrated how individuals can make meaningful changes through advocacy, and it was truly inspiring!

The Rare Action Network is a division of NORD that works with “advocacy partners on the federal and state level to encourage policies that are supportive of the needs of rare disease patients and their families.” Their key issues include: promoting access to newborn screening, prescription drug-cost sharing, Medicaid/CHIP eligibility, affordable access to medical foods, step therapy, and rare disease councils.

In 2019, the Texas Rare Action Network be working with Texas lawmakers to approve the creation of a Rare Disease Advisory Council to “evaluate and make recommendations to the state on issues related to health care access and coverage for rare disease patients.” Creation of this council is essential to ensuring that people with rare diseases continue to have access to the care, treatment, and resources that they need as well as promoting research and prevention initiatives.

The Greenwood Law Firm is committed to standing with the Texas Rare Action Network to create meaningful change for people with rare diseases. To find out how you can get involved, follow the Texas Rare Action Network on Facebook and Twitter or visit their website at http://rareaction.org/resources-for-advocates/state-action-center/texas/