Find Congressional Staffers

Build The Relationship

Start a Relationship with Your Congressional Office

Behind every co-sponsorship, every funding line, and every regulatory fix stands not just a member of Congress, but the staffer who reads the briefing, tracks the bill, and decides what lands on the boss’s desk. For the mitochondrial disease community, building a real relationship with the right people in a congressional office is not a courtesy call — it is the work. These are the people who remember a family’s story when a funding vote comes up, who flag UMDF’s priorities when NIH language is being drafted, and who open the door the next time we need to be heard.

With an estimated 80k people living with mitochondrial disease in the U.S., and only a handful of the more than 300 known variants carrying an FDA-approved treatment, we cannot afford relationships that start cold when a bill is already moving. Trust takes time to build, and it is what turns a policy ask into action – we encourage you to invest in these relationships early, sustain them consistently, and make sure the people with the power to move our priorities forward never forget the faces and families behind them.

UMDF Congressional Lookup
Before You Continue

This tool connects you directly with the congressional staff who work on health policy for your U.S. Senators and Representative. Before continuing, please confirm the following:

  • I am part of, or an ally to, the mitochondrial disease community.
  • I will communicate respectfully and civilly with congressional staff.
  • I will use this tool only for its intended purpose — advocating on behalf of the mito community — and not for spam, harassment, or unrelated messages.
  • I am using this tool as myself, not through automated or bulk means.
That’s okay — this tool isn’t for everyone. You can still learn more about mitochondrial disease and other ways to help at UMDF.org.
Tips for Success

Working with Congressional Office Staff

Every member of Congress has staff in Washington, D.C., as well as staff who work in the member’s state or congressional district. Members of Congress rely heavily on their staff to meet with constituents and other stakeholders, review policy issues, draft legislation and correspondence, and advise them on the issues before Congress.

Legislative staff in Washington typically handle specific policy areas, such as health care, defense, foreign policy, or education. House staff often cover several policy areas, while Senate and committee staff tend to have more specialized portfolios.

For members of the Mitochondrial Disease Advocacy Coalition, the congressional staff member responsible for health care policy will generally be the best person to contact about issues affecting patients and families living with mitochondrial disease. Meeting with congressional staff is an important and effective way to share your personal experience, educate the office about mitochondrial disease, discuss the Coalition’s policy priorities, and ask the member of Congress to take action.

Finding Your Congressional Health Staffer

The Mitochondrial Disease Advocacy Coalition has made it easy to identify the appropriate health policy staff for your members of Congress.

Use the Find Your Staffer tool above to locate the appropriate congressional contact. Once you identify the health staffer, you can contact them directly by email to request a meeting or share a specific mitochondrial disease priority.

Do not be discouraged if you meet with a staff member rather than the Senator or Representative directly. Congressional staff are responsible for learning about these issues, advising the member, and helping determine what actions the office may take.

Scheduling a Virtual Meeting with Congressional Staff

Congressional staff spend a substantial amount of time meeting with constituents and other stakeholders and are accustomed to meeting virtually using Zoom, Teams, or similar platforms. A typical meeting may be scheduled for 20–30 minutes, although staff may have less time available on particularly busy days.

Email is generally the best way to request a meeting. Your initial email should be short, personal, and specific. You do not need to explain every aspect of mitochondrial disease in the meeting request. The goal of the initial email is to introduce yourself and secure the meeting.

Be sure to tell the staffer:

  • 1

    Who you are: A patient living with mitochondrial disease or a caregiver for someone with mitochondrial disease.

  • 2

    Your connection to the community: A member of the Mitochondrial Disease Advocacy Coalition.

  • 3

    Why you are contacting the office: You would like to discuss issues affecting people living with mitochondrial disease and their families.

  • 4

    What you would like to discuss: The Coalition’s current policy priorities and, where appropriate, the Congressional Mitochondrial Disease Caucus.

  • 5

    What you are asking for: A brief virtual meeting with the staff member.

Remember: Your Story Matters

Whether you are requesting a meeting or simply sending an email, your experience as a patient or caregiver is one of the most important things you can share. You do not need to be an expert on Congress or federal policy. Tell the staffer who you are, briefly explain how mitochondrial disease has affected you or your family, and clearly state what you would like the congressional office to do.

Whenever possible, keep your communication personal, concise, and focused on a specific request. Your experience can help members of Congress and their staff better understand mitochondrial disease and why federal action matters to the patients and families they represent.