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Join us for Dysautonomia Advocacy Week 2026!
Dysautonomia International invites US patients, family members, clinicians, researchers and allies to participate virtually in Dysautonomia Advocacy Week 2026, from Tuesday March 3rd through Friday, March 6th. Our prior Dysautonomia Advocacy Days have been in person on Capitol Hill, but with the goal of making advocacy more accessible to our patient community, Dysautonomia Advocacy Week will be virtual this year. We need EVERYONE to get involved, so Congress knows we are a large patient community that needs their support!
We'll be advocating for three Congressional priorities during Dysautonomia Advocacy Week 2026:
ASK #1: Request an increase in POTS and other dysautonomia research funding at the National Institutes of Health.
ASK #2: Adding POTS and other forms of dysautonomia to the Congressionally Directed Medical Research Programs (CDMRP). Additionally, we are asking Congress to expand clinical access to dysautonomia specialty care for over 10 million Americans who rely on the military health system for their healthcare, as there is only one autonomic neurologist in the entire system.
ASK #3: Increase access to care for dysautonomia patients through expanded telehealth services. Specifically, we are asking Congress to support the CONNECT for Health Act.
You can participate in four different ways (or all of them!) during Dysautonomia Advocacy Week:
1. Email your members of Congress
2. Call your members of Congress
3. Meet with your members of Congress/their staff over Zoom (requires advanced registration)
4. Donate to support Dysautonomia Advocacy Day expenses and scholarships for fellow advocates.
SCHEDULE OF ACTIVITIES
Informational Webinar
How To Get Involved with Dysautonomia Advocacy Week
January 21st, 6-7PM Eastern - Tune in to this free webinar to learn more about Dysautonomia International's US Congressional advocacy efforts over the years, our 2026 advocacy priorities, and an overview of how Dysautonomia Advocacy Week 2026 will work. This webinar is optional for advocates to attend. Sign up for the free webinar here.
Mandatory Training for House & Senate Meeting Attendees
If you would like to join us to meet with House and Senate offices over Zoom during Dysautonomia Advocacy Week, you must register by Feb 2, 2026 and then you must attend one of the trainings below via Zoom in order to be able to participate in the House or Senate meetings.
Monday, February 23rd, Noon-1PM Eastern
Thursday, February 26th, 9-10PM Eastern
Sunday, March 1st, 4-5PM Eastern
Dysautonomia Advocacy Week - Senate Meeting Day
Tuesday, March 3rd
Registered advocates will participate in 1 or 2 Senate meetings over Zoom, each approximately 30 minutes in length. All meetings will be scheduled between 9AM and 4PM local time.
Dysautonomia Advocacy Week - House of Representatives Meeting Day
Wednesday, March 4th
Registered advocates will participate in 1 or 2 House meetings over Zoom, each approximately 30 minutes in length. All meetings will be scheduled between 9AM and 4PM local time.
Dysautonomia Advocacy Week - Email Congress Action Day
Thursday, March 5th
Whether you attended the House and Senate meetings or not, we invite everyone who cares about dysautonomia advocacy to send an email to their members of Congress on March 5th urging them to support our three Dysautonomia Advocacy Week 2026 priorities. We will provide a link to an "email your Congressional members" form with a sample letter closer to the event date.
Dysautonomia Advocacy Week - Call Congress Action Day
Friday, March 6th
Whether you attended the House and Senate meetings or not, we invite everyone who cares about dysautonomia advocacy to call their members of Congress on March 6th urging them to support our three Dysautonomia Advocacy Week 2026 priorities. We will provide a sample call script and an easy way to call your member of Congress closer to the event date.
EVENT DETAILS
Participating in the Email Congress or Call Congress action days doesn't require advanced registration, but if you would like to join us to participate in the meetings with House and Senate offices over Zoom on March 3rd & March 4th, you must register in advance and complete a mandatory training webinar.
Early Bird Registration Deadline: February 2, 2026
Early Bird Cost: $10 per household (multiple household members can be on one Zoom call together)
Late registration (after Feb 2, 2026) will be accepted on a rolling basis if meeting slots remain available.
Late Registration Cost: $30 per household
Registrations are non-refundable and not transferrable. You must use your real name and current residential address to register (this is required by some Congressional offices when we schedule meetings).
After you register, we'll arrange a Zoom call with your members of Congress or their staff. Most advocates will get to meet with their two Senate and one House offices. Some advocates may be asked to join a House or Senate meeting outside of their own district to support fellow advocates. While uncommon, some members of Congress may deny the meeting request. In such cases, we try to match advocates with another House or Senate office in their geographic area.
Since the meetings are 30 minutes or less and some meetings may have a large number of advocates attending, it is possible that not every advocate will be able to speak during each meeting. Whether you are speaking or not, having a large number of advocates from your area shows your members of Congress how important this cause is to their constituents.
Due to the complex nature of Congressional schedules, it is likely that your exact meeting times won't be known until a few days before the March 3rd and March 4th meeting dates.
If you've never advocated before, don't worry! We offer comprehensive training, downloadable materials to help during your meetings, and a Dysautonomia International staff member or experienced volunteer will be present on each call to help guide the conversation.
CANCELLATION: If you are unable to attend the House or Senate meeting that has been scheduled for you, it is very important that you notify us as soon as possible. If you are unable to make it, we need time to cancel your meeting or assign another advocate to attend your meeting. Congressional offices get annoyed when they have set aside time to meet with constituents and no one shows up, and we don't want to harm the collaborative relationship Dysautonomia International has built with many House and Senate offices over the years.
SCHOLARSHIPS: If you are experiencing economic hardship and cannot afford the $10 registration fee, you can apply for a scholarship to cover the fee. Please fill out this form to request a scholarship. There are limited scholarships available, so we ask individuals who can afford to do so, to consider donating to cover scholarships for those who need it. The registration fee helps cover our costs in organizing Dysautonomia Advocacy Week, which are substantially more than $10 per advocate. Our goal is to support as many advocates as possible to participate in the event.
ELIGIBILITY: Dysautonomia Advocacy Week 2026 is only open to US residents, because most members of Congress will only meet with US residents.
FREQUENTLY ASKED QUESTIONS
Do I have to attend on March 3rd and March 4th or can I just do just one day?
When you register, you can indicate if you are available on both days, or just one of the days.
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". Since you are on Zoom, please ensure whatever will be visible on camera looks professional, neat and tidy.
Do I have to have dysautonomia to participate?
We welcome everyone who is passionate about advocating for people with autonomic nervous system disorders to participate. Prior Dysautonomia Advocacy participants have included patients, family members, friends, medical professionals, and researchers. The more, the merrier! Each household only needs to complete one registration.
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. This is not a partisan event. We are educating our members of Congress on the needs of our patient community.
Will I be going to meetings 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 health policy 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 advocate on other issues during Dysautonomia Advocacy Week meetings, calls or emails?
Dysautonomia International staff and board members, and our professional lobbying firm, engage with members of Congress and federal agency staff throughout the year to advocate for a wide array of policies that benefit our patient community. However, advocacy days are most effective when all of the advocates attending focus on our 3 "asks." When you meet with your members of Congress and their staff during Dysautonomia Advocacy Week, you are attending as a representative of Dysautonomia International, so we require that all advocates stick to our designated asks. We also ask that you stick to the three asks if you are calling or emailing your member of Congress as a participate in Dysautonomia Advocacy Week. We will provide background information during the training and downloads on each of these topics you can review before your Congressional meetings, so you feel well-prepared on each topic. If you have other issues you'd like to discuss with your members of Congress, you can always reach out to their home district office to request a Zoom or in person meeting, or email or call them on your own.
How soon will we know if our advocacy was successful?
The outcome of our 2026 advocacy efforts generally won't be known until Congress passes its Fiscal Year 2027 budget, which typically happens in December 2026 or spring 2027 (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 Week.
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 Week meetings with the appropriate offices. Please provide the full name and home address for each guest you register for.
Checkout
Thank you for registering for Dysautonomia Advocacy Week!
You're all set. A confirmation email will be sent to you soon with links to register for a training session. 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, the stronger our advocacy message will be. Share this link to the Dysautonomia Advocacy Week website, bit.ly/DysAdvocacyWeek2026, 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.