Thanks to the generous support of sponsors and individual donors, and with the intention of making conference as accessible as possible to as many people as possible, we are pleased to offer the Virtual Conference at no cost to participants. If you would like to make a donation to support our conference and other programming, please click here.
Nope! You only need to register for the conference here, and then you can join any of the sessions you’d like. The zoom links for each session will be posted on the session schedule before the conference event begins.
Only register adults, teens, and children who have a unique email address on the registration form. Any teens or children who do not have their own email address can still participate in the teen and children sessions by having their parent or guardian complete the waiver form accessible in the specific session they want to participate in.
The Virtual Annual Conference program, including presentations and online meet-ups, was driven by the needs of the community, with the Foundation’s Volunteer Leadership Committee working hand-in-hand with the staff team to create a meaningful experience for all. The conference offers:
- Marfan sessions See all Marfan Sessions here.
- VEDS sessions See all VEDS sessions here.
- Loeys-Dietz sessions See all LDS sessions here.
- Community-focuses sessions, that focus on building community and connection, regardless of which condition you or your family have. See all Community sessions here.
- Support groups, which focus on support and conversation among people who are affected by similar conditions or in similar ways. See all support sessions here.
- Teen programming (additional registration required) See all teen programming here.
- Children’s programming (additional registration required) See all children’s programming here.
Sorry to hear that! We used a software called Eventable to add calendar buttons to each session for your convenience. It works by downloading a separate calendar. If you’re not seeing the sessions on your main calendar, check your calendar menu and select the one called “The Marfan Foundation Calendar Events.” You can also download all of the sessions at once to that calendar by clicking here here , and delete the ones you’re not interested in.
We have also added additional calendar buttons to each session to make sure it works for everyone. If the “add to calendar” drop down doesn’t work, you can use the “add to outlook” or “add to google” options just below it.
If it’s still not working for you, the good news is you don’t need to download the session to your calendar in order to attend! The zoom links are available for each session in the session schedule, and you’re welcome to join directly from the Conference website.
Several sessions, mostly those that feature medical presentations, will be recorded and available after the session. We will link to the unedited zoom recording soon after the session. You can find the link in the session schedule, in the same place you would have joined the live zoom session.
They will also be available at a later date on The Marfan Foundation’s YouTube Channel. We will announce their availability. You may also subscribe to our YouTube Channel to receive an automatic alert.
If a session will be available to view later, it will say “recorded” in the session’s schedule. If it will not be available to view later, it will say “not recorded” in the session’s schedule.
We also have live Spanish translation for a number of our most popular sessions. To access the Spanish live steam, choose the Spanish Translation zoom link from the session’s schedule page (available in July).
To see all the Spanish translated sessions, click here.
Schedule times are published in Eastern Daylight Time (GMT-4). Here is a time zone converter to help you find your local time.
You can also use the “add to calendar” buttons to add to calendar in your time zone.
The Community Cafe is an open space for conversation and connection! It is essentially an open Zoom meeting running from 7am ET to 12pm ET for the duration of conference. Visit the community cafe here.
Community Café Guidelines
- This space is for community members to meet and chat with each other in a virtual setting.
- Be kind and respectful to others, even if they have differing opinions than your own.
- Be patient when listening to others speak and do not interrupt them.
- Please be polite and refrain from swearing, taunting, name calling, etc.
- Remember our community is diverse. Refrain from making universal declarations condemning decisions that differ from your own. What works for you may not work for someone else.
- Do not provide medical advice. If medical questions arise, remember you can get your questions answered at marfan.org/ask.
- Please refrain from making derogatory comments about doctors and institutions within our community.
- If you run into a conflict during a meeting that you feel warrants additional attention by Foundation staff, contact email@example.com.
Helpful Tips for a Virtual Meeting
- Mute your microphone when not speaking
- Be mindful of background noise, which can include keyboard typing, paper shuffling, pet noises, etc.
- We encourage you to use your camera to make the interaction more social. Remember to position your camera in a way where it is at eye level if possible, and be mindful of your background and attire.
Thank you! Your support is always appreciated. To make a donation in support of our programs and services, please click here to be redirected to a secure donation form. If you have any donation-related questions, please contact Helaine Baruch, our Chief Philanthropy Officer, at firstname.lastname@example.org.