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.
2017 Conference Highlights:
- We launch the conference on Friday, August 4 with our second Conference Walk for Victory. We will bring everyone on a short bus ride to Chastain Park to enjoy fun activities, music and games and then take a short walk in the park. Buses will take everyone back to the hotel for the evening activities.
- On both Saturday and Sunday, August 5 and 6, adult attendees hear the latest information on diagnosis, treatment, and research during the General Session and in topic-specific small- group workshops led by medical and social service experts on Marfan and related disorders.
- For the first time, attendees will have access to their own personal conference agenda through a mobile app called Whova. The app 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. We will use the app to send announcements and reminders to attendees, beginning when you register and during conference. This app is accessible for all smart phones. 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 through planned activities.
- A new Creating Connections luncheon on Saturday provides opportunities for attendees to network with others through planned activities.
- Young adults (19-25) 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 includes a trip on Saturday and a separate hospitality space with planned activities hosted by the members of our Young Adult Council and an Adulting Successfully luncheon.
- Teens (13 to 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 teens take a trip to the College Football Hall of Fame and World of Coke An Interactive mystery experience, movies, games, and other activities that promote friendship and self-esteem complete their conference experience.
- Children (5 to 12) take a trip to the Atlanta Aquarium on Saturday. On Sunday, the children participate in an interactive mystery game and then enjoy games, arts & crafts, and more.
- For our Spanish-speaking attendees, a medical workshop, led by a Spanish-speaking will be offered on Saturday.
- A Saturday evening program highlighting comedian Andy Erikson and more. Sunday’s closing luncheon will feature a tall size fashion show featuring our very own teens and young adults as models.
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. Patient assessments take place on Thursday, August 3, and Friday August 4, 2017. Echocardiogram and eye appointments take place on Thursday at Sibley Heart Center and all other appointments take place on Friday at Emory Healthcare. Shuttle bus transportation will be provided all day.
Scholarships will be awarded to first-time attendees by completing the scholarship application form. Scholarships are only available for conference attendees who live in the U.S. Scholarships, are partial and include one adult registration and two hotel nights. Thanks to a grant from Global Genes we are able to provide some additional travel money, based on need. Children and teens are always free with one with on registered or scholarship adult (please note the deadline). Apply for a scholarship by April 15, 2017.
Important Dates and Deadlines
- April 15, 2017 - Conference Scholarship Application Deadline
- May 15, 2017 - Free Patient Health Assessment Application Deadline
- June 1, 2017 - Children, Teen, and Young Adult Programs Registration Deadline
- June 1, 2017 - Early Registration Deadline
- July 17, 2017 - by 6:00 PM EST – Marriot Buckhead Registration Deadline
Early Registration (by June 1, 2017)
Late Registration (after June 1, 2017)
Welcome Dinner Meal Only
Saturday Lunch Only
Sunday Lunch Only