Loading....
Join us for Dysautonomia Advocacy Day!
Dysautonomia International invites US patients, family members, clinicians, researchers and allies to join us in Washington, DC on Wednesday, May 7th, 2025 for Dysautonomia Advocacy Day on Capitol Hill. There is a mandatory training in DC for all advocates on the evening of May 6th.
We'll meet with our members of Congress and their staff to raise awareness about autonomic nervous system disorders, seek increased federal investment in dysautonomia research and clinician education, and advocate for the needs of our patient community!
Can't attend in person, but still want to help the cause? You can donate to Dysautonomia International to help cover Dysautonomia Advocacy Day expenses and provide scholarships for other dysautonomia advocates to attend.
Schedule
Tuesday, May 6, 2025
5:00PM - 5:30PM - Check in in the lobby of the American College of Surgeons Building, 20 F Street Conference Center, 20 F Street NW, Washington, DC, 20001. We encourage guests to eat dinner before arriving.
5:30PM - 6:30PM - Research Updates on POTS and Other Forms of Dysautonomia
6:30PM - 6:45PM - Break/Light Refreshments
6:45PM - 9:00PM - Mandatory Dysautonomia Advocacy Day Training. All advocates must complete this training to participate in Congressional meetings on Wednesday, May 7th. We'll review the details of our advocacy day asks, how to have an effective meeting with Congressional offices, how to use the Advocacy Day app, how to navigate around the Capitol buildings, and we'll get to meet the other advocates from our state. We'll also hand out printed materials all advocates need for their Congressional meetings.
Wednesday, May 7, 2025
8:30AM - 9:00AM: Online check-in through the Advocacy Day app - let us know you're still planning to attend your assigned Congressional meetings.
9:00AM: Group photo on the Capitol building steps.
9:30AM - 4:00PM: Within this window of time, advocates meet with their Congressional offices in the House and Senate buildings. Each advocate will have approximately three meetings each, each lasting 15-30 minutes in duration. There is typically time to rest in between meetings. There are several cafeterias and restaurants in the Capitol area if you would like to purchase food or drinks.
4:00PM: Advocacy Day concludes. Before departing, advocates should complete their meeting summaries in the Advocacy App while the meetings are still fresh on their mind.
Event Details
This year we'll be using the Advocacy Day app to ensure our day runs smoothly. The app is free to download for iPhone and Android users. Details on how to use the app will be emailed to registered advocates closer to the event date.
Two or more dysautonomia advocates will be paired together for each Congressional meeting, and everyone will have training on how to have a successful Congressional advocacy meeting the evening before our meetings on the Hill.
Cost: Registration is $20 per person. Please only register if you plan to attend in person, since our team has to put in substantial time and effort to schedule meetings with your House and Senate members. Registration is non-refundable and non-transferrable.
Scholarships: If you are experiencing economic hardship and would like to apply for a scholarship to cover the Advocacy Day registration fee, please fill out this form. There are limited scholarships available, so we ask individuals who can contribute to consider donating to provide more scholarships.
Registration Deadline: May 1, 2025
Cancellation: It is very important that registered guests contact us as soon as possible if they are unable to attend by calling 631-202-1720 or emailing advocacy@dysautonomiainternational.org. Busy Congressional offices can become irritated when advocates don't show up for scheduled meetings, so we need to let them know if you are unable to make it.
Eligibility: Dysautonomia Advocacy Day is open to US residents only because most members of Congress will only meet with US residents.
COVID-19 Policies: We will use Corsi-Rosenthal boxes to help clean the air during our training session on May 6th. We encourage guests to wear KN-95 masks, but this is not required. Please be aware that most people working and visiting Congressional buildings for various causes will not be masked. If you are feeling unwell or have recently been around someone with a respiratory or other infection, please stay home. For dysautonomia community members who are unable to attend in person, we offer virtual advocacy opportunities throughout the year.
Travel Information
All Dysautonomia Advocacy Day attendees are responsible for their own travel, lodging, and meal costs. You can get to the Capitol by plane, train or automobile. We've also pinned a post in each of our state support groups to help advocates find others who may be interested in carpooling together.
Air Travel:
Please note, new federal laws require a Real ID compliant driver's license or passport to travel by plane in the US starting on May 7th. Please check with your state DMV to find out if your driver's license is Real ID compliant. Read more about Real ID here.
Ronald Reagan Washington National Airport
- Closest airport to DC
- To get into Downtown DC: This airport has a stop on the Blue and Yellow Metro/train lines. One can also grab a ride from the official taxi stand outside of baggage claim, or grab an Uber/Lyft/cab.
Washington Dulles International Airport
- Located 26 miles from DC
- To get into Downtown DC: This airport has a stop on the Silver Metro train line. Buses such as the Metrobus Route 5A and Virginia Breeze travel from Dulles to DC, or one can take the Silver Line Express Bus to a nearby metro station that heads into DC (travelers should do their own research depending on their arrival times). Washington Flyer taxis and rideshares can also be called.
Baltimore/Washington International Thurgood Marshall Airport
- 32 miles from DC
- To get into Downtown DC: Short shuttle/bus to nearby train station, where a MARC or Amtrak train can bring one to DC. Taxi/rideshare is also an option, though longer and more expensive.
Amtrak Trains
Amtrak trains from all over the US arrive at Washington DC's Union Station, a few blocks from the Capitol and one block from the 20F Conference Center where our May 6th training is.
The Metro (the 3 stations closest to the Capitol):
Union Station (0.6 miles)- closest to our training location on Tuesday
Capitol South (0.4 miles)
Federal Center (0.6 miles)
Driving/Parking:
It can be challenging to find a parking spot in the Capitol area and most parking spots are not free. We recommend using the free app SpotHero, to help find parking garages and rare on street parking during your visit. For our Tuesday night training, the 20 F Street Parking Deck, accessible from E Street is $23.99.
Buses:
The Metrobus has many stops all over DC
Some of the Metrobus lines (such as route 32) have stops right along Capitol Hill
Cab/Rideshare:
Uber, Lyft, traditional cabs, and scooter/bike rentals are available throughout the Capitol.
Accessibility:
All Congressional buildings are wheelchair and service dog friendly. Here is a map of wheelchair accessible entrances to federal buildings within the Capitol. If you need other accommodations, please reach out to Dysautonomia International by April 1st at advocacy@dysautonomiainternational.org.
Lodging Information
Guests are responsible for their own lodging. Dysautonomia Advocacy Day guests may choose to reserve a room in the discounted room block at the Arlo DC hotel for $259+ tax a night. To use the discounted room rate, rooms must be booked using this link by April 18th, while supplies last.
Arlo DC
333 G Street NW
Washington, DC 20001
Arlo guests may want to use self-parking at the Capitol Crossing Garage at 200 and 250 Massachusetts Avenue ($25 per night). The address is 701 3rd Street NW Washington, DC 20001. You can find other parking options by using the free SpotHero app.
Here's a link to other Capitol area hotels. AirBnB has other rentals available and there's always crashing on a friend's couch if you know anyone in the DC area.
Frequently Asked Questions
How much does it cost to attend Dysautonomia Advocacy Day?
It is $20 to register for the Dysautonomia Advocacy Day. Guests are responsible for purchasing their own travel, lodging and meals.
Do I have to come to both days of advocacy day or can I just do one?
Yes, you must attend the training session on the evening of Tuesday, May 6th in order to participate in Dysautonomia Advocacy Day on Wednesday, May 7th.
How do you decide which legislators I meet?
You will likely meet with your one House and two Senate offices. We match you with your elected officials based on the address you provide during registration. Most advocates have three meetings throughout the day with breaks in between.
What is the dress code?
Business-professional attire is required for Congressional meetings, with a flair of turquoise if possible. We want to look "turquoise branded" when walking around the Hill. We recommend wearing comfortable professional looking shoes. You will see other advocates all wearing the colors for their cause too. You can wear comfortable, casual clothes for the training on Tuesday evening, and may want to bring a jacket or sweater as conference centers can get a little chilly.
Do I have to have dysautonomia to participate?
We welcome everyone who is passionate about advocating for people with autonomic nervous system disorders. Prior Dysautonomia Advocacy Day participants included patients, family members, friends, medical professionals, and researchers. The more, the merrier!
Do I need to be a person who understands politics?
Absolutely not. You simply need to be passionate about raising awareness and improving quality of life and access to medical care for millions of Americans living with dysautonomia.
Will I be going to meetings on Capitol Hill alone?
No, we always will have at least two or more advocates in every Congressional meeting.
Will I meet with my Member of Congress, or will it be someone from their staff?
We always try to schedule you with the Members themselves. However, because of their busy schedules, you will likely meet with their staff. Most Congressional staff members are incredibly knowledgeable and play a key role in advising their Member of Congress on key legislative issues. They can be your biggest champions.
Can I take photos?
Yes, we encourage advocates to take a lot of photos and video to share on social media. However, you cannot take photos or videdos in Congressional offices without permission of the office staff. You can ask to take a group photo with the staff after your meeting is over, or take a photo in the hallway with your fellow advocates.
How soon will we know if our advocacy was successful?
The outcome of our advocacy efforts generally won't be known until Congress passes its Fiscal Year 2026 budget, which typically happens in December 2025 or spring 2026 (Congress moves sloooooooow...). This undetermined result can feel unsatisfying to new advocates, but it’s important to remember that every meeting builds dysautonomia awareness and moves us closer to our goals. The next time Dysautonomia International asks Congress to do something to help our patient community, they will remember hearing from their constituents because you met with them during Dysautonomia Advocacy Day.
What are some other things to do in DC while I'm visiting?
There are many museums and monuments to visit all over DC and lots of great restaurants. TripAdvisor has some fun ideas.
Why is Dysautonomia Advocacy Day only open to US residents?
Most members of the US Congress will only meet with advocates who live in their Congressional district. If you live in another country and would like to plan a similar Dysautonomia Advocacy Day in your country, Dysautonomia International would love to work with you. Please reach out to advocacy@dysautonomiainternational.org and let us know what country you'd like to plan an advocacy day in.
During the registration process, you will be asked to enter your street address. This information will help us know which members of Congress represent you, so we can scheduled your Advocacy Day meetings with the appropriate offices. Please provide the home address for each guest you register for.
Checkout
Thank you for registering for Dysautonomia Advocacy Day!
You're all set. A confirmation email will be sent to you soon. If you do not see a confirmation email within the next 2 hours, please check your spam folder.
Help us get the word out to other dysautonomia advocates! The more people that join us in DC, the stronger our advocacy message will be. Share this link to the Dysautonomia Advocacy Day website, bit.ly/DysAdvocacy2025, with patient support groups you are part of. You can also download these social media graphics to let others know you are a proud dysautonomia advocate.
Please note, new federal laws require a Real ID compliant driver's license or passport to travel by plane in the US starting on May 7th. Please check with your state DMV to find out if your driver's license is Real ID compliant. Read more about Real ID here.