Know the Signs, Fight for Victory

Thank you for joining us at this year’s E3 Conference!

Our next conference is scheduled for July 12-15, 2023, in Chicago.

Registration will be coming in the Spring of 2023. Please check back for updates.

Thank you to our presenting sponsor

THANK YOU TO OUR SPONSORS

The Marfan Foundation hosts an annual conference that provides people living with Marfan syndrome, VEDS, Loeys-Dietz and related conditions, and their families, an opportunity to learn about these conditions from the country’s medical experts, hear about the latest research, and connect with other people who are on the same medical journey.

At this conference, we provide specialized programs and workshops for children (ages 5-12), teens (ages 13-18), and adults. In addition, we offer a free health fair for those who do not have access to expert medical care near their home or lack healthcare coverage. This unique offering allows health fair attendees to meet with members of our Professional Advisory Board and medical experts from the host institution to discuss diagnosis and treatment. The opportunities we provide for medical education and community connection are invaluable to all who attend. Through our scholarships, we provide those with financial hardship assistance to attend the conference.

For the 2022 conference, all sessions will be presented in English. Also, please note that childcare/programming is not provided for children under five years of age.

IMPORTANT DATES & DEADLINES 

  • Ongoing – Free health screening application deadline
  • April 22, 2022 – Conference scholarship application deadline
  • May 16, 2022 – Recipients of conference scholarships and attendees with health screening appointments will be notified 
  • May 31, 2022 – Early registration deadline (reduced fee ends) 
  • June 13, 2022 – Last day to register for children and teen programs 
  • June 13, 2022 – Deadline to book VEA Newport Beach hotel rooms at the discounted rate

Conference Highlights

  • Step 1 Mixers

    E3, our annual conference, officially launches the afternoon of Friday, July 8, with condition-specific meet-and-greet mixers intended to help you find old friends and make new friends who have the same diagnosis.  

  • Step 2 Welcome Dinner

    At Friday night’s Welcome Dinner and Awards Ceremony, attendees, speakers, medical professionals, board members, and staff gather for a buffet dinner and presentation of the Foundation’s historic awards to honor those who have helped make an important contribution to the Marfan syndrome, VEDS, LDS, and related conditions community. 

  • Step 3 General Session

    On Saturday, July 9, the General Session features the latest information on our progress over the last 40 years, including research on Marfan syndrome, VEDS and LDS; aortic and vascular surgery; physical activity; foot and ankle health; and mental health

  • Step 4 Saturday Workshops

    In the afternoon, small-group workshops led by medical experts on Marfan syndrome, VEDS, LDS, Stickler syndrome, and related conditions provide an opportunity to have your questions answered by the experts on various topics related to your or your loved one’s diagnosis.  

  • Step 5 Connections Luncheon

    A Creating Connections luncheon on Saturday provides an opportunity for attendees to network with others, by state or topic. 

  • Step 6 Dessert Social

    On Saturday night, we will hold a Dessert Social. This fun event is for everyone and will feature games, music, dancing, and much more. 

  • Step 7 Awards Breakfast

    At breakfast on Sunday, July 10, we will have a special presentation of our volunteer awards ceremony. It is a chance to exchange contact information with your new friends before heading off to Sunday workshops.  

  • Step 8 Sunday Workshops

    After breakfast on Sunday, small-group workshops will continue with topics related to quality of life and peer-to-peer support. These workshops will feature coping strategies and activities you can continue to practice at home. There will also be several fun activities to build camaraderie with others who share the same interests. 

  • Step 9 Teens Only

    Teens (ages 13-18) have a complete program designed for their needs and interests. On Friday, July 8, the teens meet for a group dinner to get to know each other. On Saturday, July 9, they can ask their medical questions at a Q&A breakfast with several expert physicians before traveling to Disneyland for a chaperoned fun day in the park. That night, they get together for games and other activities. On Sunday, July 10, teens attend small-group workshops designed specifically for them. All activities promote friendship and self-esteem to complete their conference experience. Teens must be ages 13-18 on July 8, 2022 to participate in this program. Teens are free with a fully registered or scholarship adult.

    The Marfan Foundation is thrilled to be able to offer this exciting off-site trip to Disneyland as part of our conference programs for children and teens! The safety and needs of all our participants are first and foremost, and we are working diligently with the park’s Disability Services, parents, and medical professionals to plan activities that are appropriate for children and teens with Marfan syndrome, VEDS, LDS, and related conditions. We’re continuing to work through all the details – including identifying rides that are suitable for individuals with aortic and vascular conditions, special entrances and wheelchair accessibility, limited wait times, providing a special air conditioned lunch, shady rest spots, and much more! There are so many ways to take in the magic of Disney and we are committed to providing a safe, fun, and memorable experience for everyone.

    As parents, we understand you most likely have questions to feel more comfortable sending your child on the off-site trip to Disneyland, and we are happy to answer them all. Please click here for our FAQ document about the trip and be on the look out for our parents’ webinar that will address any of your other questions and concerns. In the meantime, if you have any questions that we haven’t covered or can’t wait please email Dominga Noe at dnoe@marfan.org or Andrea Friedman at afriedman@marfan.org.

  • Step 10 Kids Only

    Kids (ages 5-12) also have a complete program designed for their needs and interests. On Friday, July 8, the children meet for a group dinner to get to know each other, participate in ice breakers, and do fun activities. On Saturday, July 9, they travel to Disneyland for a chaperoned fun day in the park. On Sunday, July 10, children get the chance to create a graphic novel or other form of creative expression, attend an age-appropriate mental health workshop, and have their questions answered by expert physicians. Children must be ages 5-12 on July 8, 2022 to participate in this program. Children are free with a fully registered or scholarship adult.

    The Marfan Foundation is thrilled to be able to offer this exciting off-site trip to Disneyland as part of our conference programs for children and teens! The safety and needs of all our participants are first and foremost, and we are working diligently with the park’s Disability Services, parents, and medical professionals to plan activities that are appropriate for children and teens with Marfan syndrome, VEDS, LDS, and related conditions. We’re continuing to work through all the details – including identifying rides that are suitable for individuals with aortic and vascular conditions, special entrances and wheelchair accessibility, limited wait times, providing a special air conditioned lunch, shady rest spots, and much more! There are so many ways to take in the magic of Disney and we are committed to providing a safe, fun, and memorable experience for everyone.

    As parents, we understand you most likely have questions to feel more comfortable sending your child on the off-site trip to Disneyland, and we are happy to answer them all. Please click here for our FAQ document about the trip and be on the look out for our parents’ webinar that will address any of your other questions and concerns. In the meantime, if you have any questions that we haven’t covered or can’t wait, please email Dominga Noe at dnoe@marfan.org or Andrea Friedman at afriedman@marfan.org.

E3, our annual conference, officially launches the afternoon of Friday, July 8, with condition-specific meet-and-greet mixers intended to help you find old friends and make new friends who have the same diagnosis.  

FEES & REGISTRATION

  • Adult Conference Registration

    $450 – Covers admission to all conference events – Welcome Dinner & Awards Ceremony (Friday), breakfast (Saturday), general session (Saturday), Creating Connections luncheon (Saturday), medically focused workshops (Saturday), Dessert Social (Saturday), volunteer awards breakfast (Sunday), and quality of life workshops (Sunday) as well as registration for teens and children.

  • Adult Conference Registration – Saturday Only

    $200 – Covers admission to Saturday conference events for adults – breakfast, general session, Creating Connections luncheon, medically focused workshops, and Dessert Social. 

  • Adult Conference Registration – Sunday Only

    $150 – Covers admission to Sunday conference events for adults – volunteer awards breakfast and quality of life workshops. 

  • Teen Program

    FREE (with accompanying full Adult registration) – Teens (ages 13-18) have a complete program designed for their needs and interests. On Friday, July 8, the teens meet for a group dinner to get to know each other. On Saturday, July 9, they can ask their medical questions at a Q&A breakfast with several expert physicians before traveling to Disneyland for a chaperoned fun day in the park. That night, they get together for games and other activities. On Sunday, July 10, teens attend small-group workshops designed specifically for them. All activities promote friendship and self-esteem to complete their conference experience. Teens must be ages 13-18 on July 8, 2022 to participate in this program. Teens are free with a fully registered or scholarship adult.

  • Kids Program

    FREE (with accompanying full Adult registration) – Children (ages 5-12) also have a complete program designed for their needs and interests. On Friday, July 8, the children meet for a group dinner to get to know each other, participate in ice breakers, and do fun activities. On Saturday, July 9, they travel to Disneyland for a chaperoned fun day in the park. On Sunday, July 10, children get the chance to create a graphic novel or other form of creative expression, attend an age appropriate mental health workshop, and have their questions answered by expert physicians. Children must be ages 5-12 on July 8, 2022 to participate in this program. Children are free with a fully registered or scholarship adult.

  • Welcome Dinner & Awards Ceremony

    $50 – Cost to attend the Welcome Dinner & Awards Ceremony on July 8, 7 pm for guests of conference attendees who will NOT attend the actual conference. 

  • Creating Connection Luncheon

    $50Cost to attend the Creating Connections Luncheon on July 9, 12pm for guests of conference attendees who will NOT attend the actual conference. 

  • Dessert Social

    $50 – Cost to attend the Dessert Social on July 9, 7:30 pm for guests of conference attendees who will NOT attend the actual conference. 

  • Volunteer Awards Breakfast

    $25 – Cost to attend the volunteer awards breakfast on July 10, 8 am for guests of conference attendees who will NOT attend the actual conference. 

  • Health Fair Registration for Medical Professionals

    $200 – Covers participation as a Health Fair observer on Friday, July 7 as well as breakfast, lunch, and admission to the Welcome Dinner & Awards Ceremony. 

FREE HEALTH SCREENINGS 

Conference attendees who do not have access to quality medical care in their home area due to a lack of knowledgeable doctors and/or lack of healthcare coverage can apply for a free health screening. Individuals interested in receiving a screening must complete an application for a free health screening and contact their healthcare providers to obtain pertinent medical records, including CDs of their most recent imaging studies. All CDs must be mailed by June 1, 2022, to Lauren May, The Marfan Foundation, 22 Manhasset Avenue, Port Washington, NY 11050. 

Applications for first-time attendees will receive priority as part of a selection process. Completing and submitting the application does not guarantee an appointment. Applications will be accepted on an ongoing basis until all health screening appointments are filled. Applications received by April 15 will receive notification about the status of a health screening appointment by May 16. Patient assessments take place all day on Thursday, July 7, 2022, and Friday, July 8, 2022. On Thursday, echocardiograms and eye screenings will be performed. All other screenings take place on Friday.  All screenings will take place at the conference hotel, VEA Newport Beach.

Please arrange for appropriate travel times if you are participating in the Health Fair. If you need an echocardiogram or eye appointment, assume you have an 8 am appointment on July 7. If you do not need an echocardiogram or eye appointment but need to see other specialists, assume you have an 8 am appointment on July 8. Health fair participants will not be notified of their actual appointment time until much closer to the event.

Download and save the application below to begin completing it.

Please Note: After you complete your application please upload it here to submit.

SCHOLARSHIPS

  • CONFERENCE ATTENDEE SCHOLARSHIP PROGRAM

    Scholarships are available to help defray the costs of registration and accommodations. They are awarded based on completion and evaluation of the scholarship application form, which is due by April 22, 2022. Scholarships are only available for conference attendees who have a financial and/or medical need. Scholarships are partial and include one adult registration and two hotel nights. Applicants selected to receive a scholarship will be notified by May 16, 2022. If you are unable to attend the conference without a scholarship, please do not complete conference registration until you receive your scholarship decision email.

    Children and teens are always free with one registered or scholarship adult.  

    You must notify the Foundation before the conference if you cannot use your scholarship; otherwise, you may become ineligible to receive scholarships in the future. All scholarship awardees must use their own credit card when making a room reservation. Once you have checked into the hotel, the cost of the room for two nights will be transferred to our master account.

  • PHYSICIAN TRAVEL SCHOLARSHIP PROGRAM

    The Dr. Reed Pyeritz and Ms. Jane Tumpson Marfan Conference Physician Travel Scholarship was established to provide travel support to young physicians to encourage them to attend The Marfan Foundation’s health fair and patient conference. The recipient will receive up to $1,250 in travel and lodging expenses in addition to a complimentary conference registration.   

HOTEL & TRAVEL

The 2022 conference will take place at: 

VEA Newport Beach 

900 Newport Center Drive 

Newport Beach, CA 92660 

949-640-4000

Secondary Hotel Accommodations:

Renaissance Newport Beach Hotel

  4500 MacArthur Boulevard

Newport Beach, California 92660

Conference attendees must book their own rooms directly with the hotel to receive our discounted rate of $189/night plus taxes and fees for a standard guestroom or a guestroom with two double beds. The last day to book rooms and receive the discounted rate is Monday, June 13, 2022. Click here to book rooms at a discounted rate. 

The nearest airports to VEA Newport Beach are John Wayne Airport-Orange County (5 miles); Long Beach Airport (25 miles); and Los Angeles International Airport (44 miles). If traveling by Amtrak, the nearest train station is Irvine Station (12 miles). 

The average cab fare from John Wayne Airport to VEA Newport Beach is approximately $30 one way. Fares from John Wayne Airport to VEA Newport Beach via rideshare apps such as Uber and Lyft range from $15-45 one way. 

For a list of activities and experiences near the hotel, click here.  

To accommodate more requests for rooms with two beds, we have added the Renaissance Newport Beach Hotel, less than four miles from the host hotel. Discounted rooms with double beds are available July 6-11. Shuttle service will be provided and reduced parking will be available.

Conference Volunteers

Conference attendees interested in donating a bit of their time to volunteer at the event can sign up for a variety of activities, including stuffing conference tote bags, greeting attendees as they arrive, working the conference registration desk, etc. To view a list of volunteer opportunities and sign up for specific time slots, click here.