How To Talk To Your Legislator About Rare Disease

It’s February, and Rare Disease Week on Capitol Hill is upon us again. Patients and advocates from around the country are gathering to network and discuss the policies needed to advance rare disease research and treatment. The SmithSolve team will be on site to prepare advocates to tell their story to legislators.

Based on my experience working in government – and my passion for politics and the legislative process – this may be one of the best times in recent memory to talk to your legislator about the needs of the rare disease community.

Intrinsically, this event, sponsored by Rare Disease Legislative Advocates (RDLA), features two things that are crucial to any legislator: a chance to take a stance that nearly everyone supports, and free publicity. There is virtually no public opposition to rare disease research, and therefore it is no surprise that the 115th Congress saw nearly a quarter of the House of Representatives join the Rare Disease Caucus. Many of these members, including 75% of the caucus’ co-chairs, were not re-elected in 2018, giving eager new legislators a chance to take their place.

The single most important thing to keep in mind is that rare disease impacts everyone. Contrary to popular belief, legislators are people too. They all know someone, either directly or tangentially, that is impacted by rare disease. They’ve watched their current and former colleagues be affected by rare conditions.1,2 Until January 2019, the New Jersey delegation included a member who lost a child to a rare disease.3 This is one of the few issues where an advocate can truly appeal to their legislator as a human being, as opposed to as an accountant or donor, and really make a difference with one conversation.

Of course, there are a few other things that are critically important to remember when preparing to discuss rare disease with your legislator. The first is to know your facts. Come in prepared with statistics and real life examples of the burden of the disease, as this lends credibility to your request. Second, know what you’re asking for. It is important to go into a meeting with a legislator knowing what your goal is and a proposal to achieve it. Are you asking them to join the Rare Disease Caucus? Are you requesting that additional funding be allocated to the U.S. Food and Drug Administration and National Institutes of Health? Maybe advocating for a reauthorization of newborn screening legislation? These goals take different steps to complete and may require you to show your legislator the value in taking action.

Lastly, legislators thrive on public praise, as it builds their following and improves their electability. If you are able to get a meeting with your legislator, make sure that you offer some sort of public thanks, preferably on social media or in a letter to the editor. And of course, don’t forget to send a thank you note to the legislator themselves!


  1. Shanley H. Former New York Congressman Hinchey announces FTD diagnosis. Rare Disease Report. Updated June 28, 2017. Accessed January 23, 2019.
  2. Congressman dies of rare disease. Accessed January 23, 2019.
  3. Caldwell L. Personal tragedy drives deal-making GOP congressman on health care. NBC News. Updated May 2, 2017. Accessed January 23, 2019.