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About Dysautonomia Advocacy Day
Dysautonomia International invites US patients, family members, clinicians, and allies to join us in Washington, DC on Tuesday, March 12, 2024 for Dysautonomia Advocacy Day on Capitol Hill! Please note, registration for Dysautonomia Advocacy Day is now closed. The deadline to register was Feb 26, 2024.
What are we advocating for?
We'll meet with our members of Congress and their staff to raise awareness about autonomic nervous system disorders and seek a $10M investment in federal funding to train medical professionals on postural orthostatic tachycardia syndrome, orthostatic intolerance, orthostatic hypotension and other forms of dysautonomia.
Why are we advocating for clinician education funding?
Many dysautonomia patients experience years of diagnostic delays and have difficulty finding clinicians to treat their dysautonomia once they are diagnosed, because most clinicians have not received training on how to diagnose and treat autonomic nervous system disorders. There are simply not enough dysautonomia experts for all of the people who need help, but we can change that! Expanded clinician education programs on dysautonomia are needed to:
- improve access to high-quality medical care for millions of people living with dysautonomia;
- reduce wait times at dysautonomia speciality clinics;
- develop new dysautonomia specialty clinics;
- provide community clinicians with the knowledge needed to diagnose and treat autonomic disorders;
- prevent diagnostic delays and misdiagnosis; and
- expand the pool of researchers working on dysautonomia research, to develop more effective treatments and cures faster.
Dysautonomia Advocacy Day is our opportunity to influence federal policies that impact people with dysautonomia and let our voices be heard!
Can't attend in person, but still want to help the cause? You can donate to Dysautonomia International to help cover event expenses or sponsor another advocate.
Advocacy Day Schedule
Tuesday, March 12, 2024
8:30AM - 9:00AM: Check-in at the Capitol Hill Visitor's Center (enter on First Street, across from the Supreme Court)
9:00AM - 9:45AM: Dysautonomia Advocacy Day training; remarks by members of Congress and special guests; complimentary light breakfast (bagels, fruit, yogurt, coffee, tea, juice)
9:50AM: Group photo on the Capitol steps
10:00AM - 4:00PM: Advocates meet with their House and Senate offices; most advocates will be done by 2-3PM; there are several cafeterias and restaurants in the Capitol area if you would like to purchase food or drinks
10:00AM - 4:00PM: Dysautonomia International "Hydration Station" open at the Board of Church & Society Building next to the Supreme Court. Advocates can stop in any time during advocacy day to rest in a quiet space, grab salty snacks or hydration, and socialize with fellow advocates.
4:00PM: Before departing the Capitol, advocacy group leaders should stop by the Hydration Station for debriefing, or email their meeting summaries to Dysautonomia International staff.
Event Details
Cost: To ensure that Dysautonomia Advocacy Day is open to as many people as possible, registration is FREE, with a requested donation of $20 or more for those who can afford it to help cover our costs. Please only register if you plan to attend in person, since our team has to put in substantial time and effort to schedule DC meetings with your House and Senate members.
Registration Deadline: February 26, 2024
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 Katherine Hut, Advocacy Coordinator, at khut@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 members of Congress will only meet with US residents.
COVID-19 Policies: We encourage guests to wear KN-95 masks, but this is not required. Please note 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 COVID-19, please stay home. You can always participate in virtual advocacy day later this 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:
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
The Metro (the 3 stations closest to the Capitol):
Capitol South (0.4 miles)
Federal Center (0.6 miles)
Union Station (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.
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. You can let the cab driver know you are headed to the Capitol Visitor's Center on First Street, across from the Supreme Court.
Accessibility:
The Capitol Visitor's Center and 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 February 26th at info@dysautonomiainternational.org.
Lodging Information
Guests are responsible for their own lodging. Dysautonomia International has obtained a discounted room rate the Hilton Garden Inn, Washington DC/US Capitol hotel and The Churchill Hotel. There are limited quantities of hotel rooms available at the discounted rate. You may book lodging at any other hotel you would like. AirBnB has other rentals available and there's always crashing on a friend's couch if you know anyone in the DC area.
The Churchill Hotel
Limited availability of discounted rooms at $199 plus tax.
Group rate available until February 23rd, while supplies last.
Book through this link, or call (202)909-2129 and use group code "Dysautonomia International Advocacy Day" for the discounted room rate.
3.7 miles from Capitol Visitor's Center
Hilton Garden Inn. Washington, DC/US Capitol
Limited availability of discounted rooms at $209 plus tax.
Group rates available until February 23rd, while supplies last.
Book through this link, or call (202) 408-4870 and use
group code "DYSINT" when booking.
1.3 miles from Capitol Visitor's Center
Frequently Asked Questions
How much does it cost to attend Dysautonomia Advocacy Day?
It is free to register for the Dysautonomia Advocacy Day. There is a requested donation of $20 or more for those who can afford it to help cover event costs. Guests are responsible for purchasing their own travel, lodging and meals.
How do you decide which legislators I meet?
You will meet with your (1) House and (2) Senate offices. We match you with your elected officials based on the address you provide during registration. Most advocates have 3 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. You will see other advocates all wearing the colors for their cause too. March can still be chilly in DC, so watch the weather and pack accordingly.
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 and medical professionals. 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 try to have at least two or more advocates in every 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 2025 budget, which could be as late as December 2024. 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 khut@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/DysAdvocacy2024, with patient support groups you are part of. Download these social media graphics to let others know you are a proud dysautonomia advocate.