March for Rare
Project Alive and the MPS Society are proud to co-host March for Rare in Washington, DC. Over two powerful days, families, advocates, and community leaders will meet with members of the U.S. House and Senate and engage with leaders at the FDA to advocate for meaningful progress in rare disease policy and treatment access. In light of the recent Complete Response Letter (CRL) for RGX-121, our community is coming together to ensure our collective voices are heard. Join us as we stand united for urgency, innovation, and a future with better outcomes for individuals living with Hunter syndrome and other rare diseases.
Project Alive and MPS Society are happy to be able to provide partial funding for families wanting to join our advocacy efforts. There will be a stipend per family has increased to $750 for up to two members of a household, and two nights stay. There will be a training provided before we go to the FDA and the Hill. Stipends available first come, first serve basis.
You must complete the form if you want to be booked at the hotel, have meetings scheduled on your behalf, and if you want meal stipends.
Project Alive and The National MPS Society will host a virtual Q&A sesssion on Sunday March 8th at 5pm (EST). This session will address any questions you may have, highlight policy asks, go over the agenda, and lay out some guidelines for the visit. If you plan to attend the March for Rare event please plan to attend the virtual Q&A sesion. We will have a recording available for those who miss it.
We created a Google Drive with resources for advocates attending The Hill. Included in this is a media toolkit and info graphic highlighting the issues and asks from our community.
Here are the downloadable PDFs if you are unable to open the Google Drive.
Timing & Travel Planning
Please plan to arrive in time to attend our mandatory training and dinner at 6-8 PM ET on Tuesday evening. This session will ensure you feel confident, prepared, and unified as we head into meetings and advocacy events together.Please plan on staying at least through mid-afternoon on Thursday to attend meetings with members of Congress. If you must leave earlier, please let us know for planning purposes.
What to Wear & Bring
On Wednesday, we ask that all advocates wear black as a unified visual statement.
Please also bring photos of your loved ones—living or passed— so we can carry their stories with us throughout the day.
Travel Information
- The best airport to fly into is Ronald Reagan Washington National Airport (DCA).
- You can then take an Uber, a taxi, etc., to our hotel.
* If you have applied for a scholarship, please forward all travel receipts to angela@mpssociety.org. If we receive your receipts ahead of the trip to DC, you will receive your reimbursement on Tuesday at the dinner and training.
Hotel & Meals
We have secured a hotel room block at:
Kellogg Conference Hotel Capitol Hill at Gallaudet
800 Florida Ave NE, Washington, DC 20002
You do not have to reserve your room; we will be taking care of those details.
Please note: Each registered advocate may receive a meal stipend of $45 per person, per day (up to two people per family).
You can find a full agenda below, although it is subject to change as needed. We will continue following up with details along the way, but hope to see many of you and answer any questions you may have on Sunday.
Every letter counts. By contacting your U.S. Senators and Representatives, you’re putting a human face on Hunter syndrome and showing the urgent need for faster access to life-changing treatments like RGX-121 and DNL-310. Delays mean lost abilities, independence, and precious time for our children. Your voice can help lawmakers prioritize rare disease families, push for meaningful action, and make sure no child with Hunter syndrome is left behind.