Be Heard, Take Action

The Marfan Foundation and its divisions are pleased to announce we are hosting Virtual Capitol Hill Days, to take place April 9-11, 2024. Through virtual meetings with congressional members and their staff, you can share your story and encourage support of policies that may affect healthcare and research. Each congressional visit will be led by an experienced advocate from the Health and Medicine Counsel. You will also be joined by other key stakeholders in your congressional districts to champion and advance legislation. Participation is free.

Important Dates:

Registration is required. Deadline to register is March 22, 2024.

Advocacy Training Webinar – April 2, 2024 at 7 pm Eastern

Virtual Capitol Hill Days – April 9-11, 2024 by scheduled appointments

Registration

Every participant attending The Marfan Foundation’s Virtual Capitol Hill Advocacy Days must register so that meetings can be scheduled with their congressional officers. Participants are also required to attend an advocacy training webinar to better understand the process and be prepared for the virtual congressional meeting. See below for more information. Information shared leading up to the event and registrants’ assignments throughout the event will be sent to the email address provided during registration. The virtual meetings will take place via Zoom. The deadline to register is March 22, 2024.

Advocacy Training

The Health and Medicine Counsel and The Marfan Foundation Communications Team will provide an advocacy and communications training webinar on April 2 at 7 p.m. You will learn about how the virtual meetings will be scheduled, the agenda and policies that we will be advocating for, and how to effectively tell your lived experiences and why policies are important to you and your family. The training session will be conducted via Zoom, and recordings will be available if you cannot participate that evening.

Questions?

For any help or questions, please contact lmay@marfan.org.