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.

1^st Tuesday of each month at 8 pm Eastern Time

If you have been diagnosed with VEDS, this group is specifically for you! This is an opportunity to meet others with VEDS and talk about the challenges we all face day-to-day. If you have not yet been diagnosed with VEDS, please check out the Seeking Diagnosis group here. 

*Please note, every member wanting to join this VEDS Connect group should have a genetically confirmed diagnosis of VEDS to attend. We will request that you confirm that you have a VEDS diagnosis before admitting you to this group. We rely on your honesty to keep this a safe space for group attendees. If you do not have a genetically confirmed diagnosis of VEDS, please sign up for the Seeking Diagnosis and Newly Diagnosed group instead.*

Have you been diagnosed with Marfan syndrome, VEDS, Loeys-Dietz syndrome or another related condition? Are you between the ages of 18 and 30?  Would you like to connect with others in your age group? If so, this support group is for you.

This group meets on the first Wednesday of every month at 7 pm EST.

This group is for adults, 18-50, with Marfan syndrome or a related condition. Participants have the opportunity to connect with others with a similar diagnosis for support and sharing of resources and information. This group meets on the 1st Thursday of every month at 5:00 PM Eastern.

Join others in our connective tissue condition communities to share concerns and discuss issues related to everyday life. You will feel supported, heard, and enjoy the time spent with others.

This group discussion is dedicated to the challenges our community faces when we lose our beloved friends, community members, and family members to VEDS, Marfan, or Loeys-Dietz syndrome. It is a safe place for us to discuss our emotions, honor the memory and joy of our loved ones, and move forward together. This group is also open to anyone coping with loss in the community.

This group meets on the 2nd Tuesday of every month at 6:00 PM Eastern.

If you are a parent of an adult (18 years and older) with VEDS, we invite you to join other parents to discuss your experiences. This group will be hosted by Jan Lynch, RN, director of The Marfan Foundation’s Help & Resource Center.

* If your child is under 18, please register for the VEDS Parents Support Group *

This group meets the second Wednesday of every other month from 7-8:30pm

Ready for a viewing party? Register today to take part in #MarfanRealReels Movie Night. We’ll hold the world premiere of a Turkish documentary on Marfan syndrome and show all the #RealReels we featured during Marfan Awareness Month. You’ll also receive a link to a movie night “fun kit.” The event is free, and all are welcome.

If you have been diagnosed with LDS, this group is specifically for you! This is an opportunity to meet others with LDS and talk about the challenges we all face day-to-day. If you have not yet been diagnosed with LDS, please check out the Seeking Diagnosis group here

The Marfan Foundation welcomes you to attend the Austin Regional Symposium. The symposium is for individuals affected by Marfan, LDS, and VEDS, and their families. Presentations will focus on both adults and children, and there will be plenty of time to answer your questions. You will have an opportunity to:

Increase your understanding of your diagnosis and treatment.
* Get your questions answered by local experts.
* Improve your quality of life.
In addition, the symposium features a Creating Connections luncheon so that attendees can network with others with the same conditions from the surrounding areas.

The Marfan Foundation is hosting a virtual group for Teens ages 13-18 with Marfan syndrome, VEDS, Loeys-Dietz syndrome, and related genetic aortic and vascular conditions to increase opportunities for social interaction with others with a similar diagnosis. The Teen Talk will include open conversations and connections on various appropriate topics and will be led by our staff member, Dominga Noe, and our volunteer leader, Peter Donato. This group is not designed to offer therapy or counseling but rather an opportunity to speak on the highs and lows of living with chronic conditions and be more connected with others in the same age group.

Each group will run for approximately 90 minutes and be held from 7:30-9:00 pm ET on the third Monday of each month. The group will be held on Zoom. Teens are expected to join on camera and participate for the duration of the group. Pre-registration and parental/guardian consent for the group is required.