We are excited to share that PWSA | USA's D.C. Fly-In Application Package is now available for those who are interested in attending this brand-new advocacy event, which will take place September 19-21, 2022 in Washington, D.C. The D.C. Fly-In is an opportunity for state activists to expand efforts and engage your individual members of Congress, with support from PWSA | USA. Please note that we only have availability for 50 individuals to attend, which will be selected on a first-come-first-served basis. All expenses will be paid for thanks to grant funding from Harmony Biosciences and Saniona. Applications are due by Monday, July 4, 2022.

As stated in the application package document, Attendees will be chosen on a first-come-first-served basis. Applicants who did not attend PWSA | USA’s 2022 Volunteer Summit will receive priority status. Those who attended the Volunteer summit are still welcome and highly encouraged to apply. You are also welcome to bring your children or other family members, however, their expenses (airfare and dinner) must be paid for separately.

Because this event is funded by a generous grant, it is important that all attendees are actively engaged and participate in all areas of the D.C. Fly-In. By completing and signing this application, you agree to participate in all D.C. Fly-In activities. If attendee does not participate in all activities, your credit card on file will be charged a reimbursement fee of $650 by PWSA | USA and attendee may be disqualified from participating in future PWSA | USA volunteer and/or advocacy events where costs are covered by PWSA | USA.

It is also highly advised, but not mandatory, that participants are fully vaccinated against the COVID-19 virus. Each Congressional office maintains their own policy surrounding COVID-19 vaccination requirements and without proof of vaccination, PWSA | USA cannot guarantee your meeting will take place in person.

If you have any questions, please contact us at advocacy@pwsausa.org.

About the 2022 D.C. Fly-In

The centerpiece of PWSA | USA's 2022 Advocacy initiative is our first ever D.C. Fly-In. This exciting, in-person event will take place September 19 - 21, 2022 in Washington, D.C. and provide an opportunity for our state activists to expand their efforts and engage their individual members of Congress.

Our platform will be to encourage a non-partisan resolution declaring May 15, 2023, and every year thereafter, as PWS Awareness Day in the United States. It will also give our advocates an opportunity to speak in support or opposition of legislation that affects all of the rare disease community.

We ask that anyone who fills out our D.C. Fly-In Application Package also completes the PWSA | USA Advocacy Day Registration form by clicking HERE. This registration form is to ensure that proper meetings are scheduled on your behalf. Congressional meetings will fall between 9am-5pm ET on September 20, 2022. Please fill out this form by Friday, August 19, 2022.