Every year, we hold an annual conference which provides people living with Marfan syndrome and related disorders, 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.
We offer specialized programs and workshops for people of every age, including children, teens, young adults, and older people. In addition, we offer conference attendees free medical assessments, which we make possible in conjunction with the medical institution that co-hosts the meet with us and our dedicated medical advisors, who are the leading doctors on Marfan syndrome and related disorders from across the U.S. This is a unique offering that is truly a benefit for those who do not have access to expert medical care near their home or lack healthcare coverage. And, we offer scholarships for first-time conference attendees.
Join us on July 12-15, 2018, for our 34th Annual Conference Held in Association with
Stanford Health Care and Kaiser Permanente
2018 Conference Highlights
The conference officially launches on Friday, July 13, with our signature Victory Celebration Party. This fun family event will take place at the hotel and will feature games, music, and awards. We will have a DJ spinning tunes, face painters, and balloon artists too. This signature event is a fundraiser to help support the conference and scholarships. Similar to a Walk for Victory, you can form teams and ask family and friends to support. It’s a great time to meet up with old friends while making new ones!
On Saturday and Sunday, July 14 and 15, adult attendees will hear the latest information on research, cardiac care, managing pain through mindfulness, and osteoporosis during the General Session and learn more about other topics, and ask questions, during small-group workshops led by medical and social service experts on Marfan and related disorders.
Throughout the conference, attendees will have access to their own personal conference agenda through the mobile app, Whova. The app, which is available for all smartphones, also offers interactive maps of the hotel and surrounding area and documents related to conference activities as well as a place to take notes and a bulletin board for sharing information and photos. We will use the app to send announcements and reminders to attendees, beginning when you register and during the conference. You will also be able to access presentation outlines during workshops so you can follow along with the speakers (when available). The app will be launched in June so you can sign on early to read about conference updates. Everyone will still receive a printed version of their personal agenda plus all conference materials in their tote bags.
A Creating Connections luncheon on Saturday provides opportunities for attendees to network with others, by state, through planned activities. For some of the larger states, we will divide the tables by cities. Just look for your state or city and join your new friends for lunch.
Young adults (19-29) have the opportunity to participate in the same activities as all adults. In addition, there is a special workshop track specifically designed for this age group. Fun activities that are part of the young adult program include a trip on Saturday to the Santa Cruz Beach Boardwalk and a separate hospitality space with planned activities hosted by the members of our Young Adult Council. On Saturday, they will have a special Adulting Successfully luncheon.
Teens (13-18) have a complete program designed for their needs and interests. They can ask their questions at a Q&A breakfast with expert doctors and then attend small group workshops designed specifically for them. On Saturday, the teens will travel to Monterrey Bay Aquarium. Sunday’s activities will involve a mystery interactive theater experience, games, and art activities. All activities will promote friendship and self-esteem to complete their conference experience. Teens will also have the opportunity to participate in the mentor program as either mentors or mentees.
Children (5-12) also have a complete program designed for their needs and interested. The younger group (5-7 year olds) will have a great experience at the Happy Hollow Zoo with special learning programs, puppet shows, and hands on interactions with the animals. The older group (8-12 year olds) will enjoy a trip to the Tech Museum for a hands-on experience building robots, creating new genes, and learning how to steer a lunar module. On Sunday, the children participate in games shows and then enjoy arts & crafts, and more.
For our Spanish-speaking attendees, we will offer a medical workshop, led by a Spanish-speaking medical expert, on Saturday.
Our Saturday evening program will highlight comedian Andy Erikson and more. Sunday’s closing luncheon will include our volunteer award ceremony and video presentation of the conference.
For more detailed information about these programs and to register, please click here.
Free Patient Health Assessments
Conference attendees who don’t have access to quality medical care in their home area due to lack of knowledgeable doctors and/or lack of healthcare coverage can apply for a free patient health assessment. This opportunity is for people who are seeking a diagnosis or have a specific Marfan or related disorder treatment issue. Applications for first time attendees to the Health fair will receive priority in addition to other criteria. Completing and submitting the application does not guarantee an appointment. Applications are due on April 15. Absolutely no applications will be accepted after this date. You will receive notification about the status of a health fair appointment by May 15. Patient assessments take place on Thursday, July 12, 2018, and Friday July 13, 2018. On Thursday, echocardiograms will be performed at the hotel; a shuttle will be available for eye appointments. All other appointments take place on Friday at Stanford University Medical Center. Shuttle bus transportation will be provided all day.
Scholarships will be awarded by completing the scholarship application form, which is due by April 15, 2018. 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. Children and teens are always free with one registered or scholarship adult (please note the deadline). Click here for more details and to access the application.
Important Dates and Deadlines
- April 15, 2018 - Conference scholarship application deadline
- April 27, 2018 – Free patient health assessment application deadline.
- May 15, 2018 – Recipients of conference scholarships and patients with health assessment appointments will be notified
- DEADLINE EXTENDED: June 15, 2018 - Children, teen, and young adult programs registration deadline
- DEADLINE EXTENDED: June 15, 2018 - Early registration deadline
- June 17, 2018 - by 6:00 PM EST – Santa Clara Marriott registration deadline
Early Registration (by June 1, 2018)
Late Registration (after June 1, 2018)
Welcome Dinner Meal Only
Saturday Lunch Only
Sunday Lunch Only