Rare Disease Week on the Hill

As parents of medically compromised children, we learn to advocate for the needs of our child and family. We must advocate for appropriate access to medical care and diagnostic testing, prescription coverage through insurance and access to medications/treatments, support services for access to education, and community support services to meet the complex care needs and allow our family to remain together in the home. The list goes on and on. One thing I have come to understand is that all these necessities require yet another type of advocacy, and that is policy advocacy. This work is done at both state and federal levels.  

There is strength in numbers for policy advocacy efforts. Working as a rare disease collective group, we can make actual differences! For Rare Disease Week, I traveled to Washington, D.C. and participated in the advocacy efforts organized by EveryLife Foundation. This organization does an amazing job of educating attendees on the various policies and arranging meetings with your representatives. This allows for a powerful impact and provides a personal connection to the rare disease community. Sharing your personal story builds a connection that can lead to action. We should always remember that our representatives work for us and not the other way around. It is their job to represent their constituents, including children and adults with rare diseases, and more specifically, CDKL5 deficiency disorder.  

There were about eight legislative asks covered this year, and I am going to highlight two with strong bipartisan support that would directly help some of our CDKL5 families. These are linked to an informative one-pager on the act. 

You can learn more about all of the legislative ask by following this link: EveryLife Foundation Legislative Asks 

Are you not sure who your representatives are? You can find that information here with your zip code!  It is never too early to start building a relationship with your representatives. Let them know about your family and the impact of epilepsy and rare diseases. The connection you make could help advance legislation now or in the future. 

If you are interested in reaching out to your representative about any of these legislative asks and would like some advice or help on how to do so, do not hesitate to email