How to Take Political Action in the Rare Disease Community

Many people in the rare disease community feel compelled to take action but do not really know where to start.

As a rare disease advocate, you are critical to the legislative process. Your voice needs to be heard by policymakers, many of whom rely on advocates to set legislative priorities. In D.C. and in state capitols, the old adage “strength lies in numbers” rings true. We must utilize our passion and tenacity to take part in “Action Alerts”.

An action alert is a request made to bring a large group of advocates together to take a specific action on a current political issue.  RDLA helps organizations and advocates with their action alerts by sharing them on our websites, in monthly email alerts, monthly meetings/webinars and on Social Media.  Action Alerts can be a powerful way to engage and motivate people to participate in politics and make sure your message is heard by the public and policymakers. The more people that participate in the action, the more powerful the message. RDLA has online tools organizations can use to create action alerts and can help you design and share your message.

Types of Action Alerts

  • Phone call:  These alerts are reserved for urgent issues and usually need immediate action to save or move a piece of legislation.  RDLA’s online system provides the contact information and a sample script to help you be effective when contacting your Representative’s office.
  • Group sign on letter:  A letter is circulated in a community to gather organization’s to take a position on a piece of legislation or policy.  These letters can only be singed onto by organizations, but as an individual you can ask organizations that you work with to support.  A sign on letter is often used by organizations to allow for them easily just add their name to a letter instead of drafting and submitting their own letter on the issue.  The more organizations that are listed, the stronger the message.  RDLA helps distribute sign-on letters and we encourage organizations to support the rare disease community even on issues that may not directly benefit their specific disease.  Sign-on letters usually are for specific legislative language, if that language changes the letter must be recirculated for organizations to agree to the changes.
  • Individual Organization Letter:  Some organizations wish to send letters directly from their organizations to the Members on specific legislative issues.  For organizations wishing to grow their name recognition on the Hill this is a great opportunity to do so.
  • Emailing your Member of Congress:  An easy way for an individual to take action is to email your Member of Congress.  RDLA’s online system automatically populates your Representative’s contact information and a draft letter for you to customize once you enter in your contact information.  It usually takes 10 letters from Constituents for a Member to take a position on a piece of legislation.  Members should email you a response specific to your issue which can take up to 2 months, if you do not receive a response then you should follow up with a call.
  • Submitting comments: When a governmental agency creates policy, they often will ask for comments from community stakeholders. Agencies usually provide one to six months for comments.  Comments are usually submitted online through a form.   The agency will not respond directly to your comments.

An action alert is a great way to ensure that your voice is heard in Congress on issues relating to rare diseases. For examples of Action Alerts you can visit: Taking action on important issues ensures that the rare disease community’s voice will continue to grow louder and together we can be a driving force for change on Capitol Hill. History is shaped by people who take action!

For more opportunities to take action: