Thank You to our sponsors
The Marfan Foundation, in association with Children’s Healthcare of Atlanta and Emory Healthcare, will host an in-person conference July 10-13, 2025 that provides people living with Marfan syndrome, Loeys-Dietz syndrome (LDS), Vascular Ehlers-Danlos syndrome (VEDS), Stickler syndrome, and related conditions, and their families an opportunity to learn about these conditions from the country’s medical experts, hear about the latest research, learn ways to improve their quality of life, and connect with other people who are on the same medical journey.
Specialized programs and workshops are offered for children (ages 5-12), teens (ages 13-18), and adults, ensuring that each age group enjoys a tailored Conference experience.
In addition, a free Health Fair is available for those who lack healthcare coverage or cannot access expert medical care near their home. This unique offering allows Health Fair attendees to meet with members of the Foundation’s professional advisory board and medical experts from the host institutions to discuss diagnosis and treatment.
Scholarships are available to help make attendance possible for those facing financial hardship.
All programming is in English, and translation services are not available. However, two workshop sessions will be offered in Spanish on Saturday.
Please note that no childcare or programming is provided for children under five years of age.
IMPORTANT DATES & DEADLINES
- April 14, 2025 –Deadline for Health Fair applications
- April 14, 2025 – Deadline for Conference scholarship applications
- May 14, 2025 – Recipients of Conference scholarships and individuals approved to attend the Health Fair will be notified
- May 30, 2025 – Early registration deadline (reduced fee ends)
- June 18, 2025 – Last day to register for children and teen programs
- June 18, 2025 – Deadline to book Hyatt Regency Atlanta hotel rooms at the discounted rate
Conference Highlights
For more detailed information about these programs and to register, please click here.
FEES & REGISTRATION
-
Adult Full Program – Early Pricing
$475 – Covers admission to all adult conference events – condition-specific meetups, Welcome Dinner and Awards Ceremony (Friday), breakfast (Saturday), general session (Saturday), Creating Connections luncheon (Saturday), medically focused workshops (Saturday), 40th Celebration & Victory Party (Saturday), breakfast (Sunday), and mental health and quality of life workshops (Sunday). Children and teens attend for free with one registered adult or scholarship adult for this registration level only.
-
Adult Registration – Saturday Only
$300– Covers admission to Saturday Conference events – breakfast, general session, Creating Connections luncheon, medically focused workshops, 40th Celebration & Victory Party.
-
Adult Conference Registration – Sunday Only
$150 – Covers admission to Sunday Conference events – breakfast and mental health and quality of life workshops.
-
Welcome Dinner & Awards Ceremony
$125 – Cost to attend the Welcome Dinner & Awards Ceremony on July 11 for anyone who will NOT attend the conference.
-
Creating Connections Luncheon
$50 – Cost to attend the Creating Connections Luncheon on July 12 for anyone who will NOT attend the conference.
-
40th Celebration & Victory Party
FREE – To attend the 40th Celebration & Victory Party on July 12 for anyone who will NOT attend the conference.
-
Health Fair Registration for Medical Professionals
$300 – Covers participation as a Health Fair observer on July 11 and breakfast, lunch, and admission to the Welcome Dinner and 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 healthcare providers and/or lack of adequate health insurance coverage can apply for a free Health Fair screening. This opportunity is for people seeking a diagnosis or who have a specific Marfan syndrome, VEDS, LDS, or related condition treatment issue. Individuals interested in receiving a free screening must complete a Health Fair application and contact their healthcare providers to obtain recent pertinent medical records, including their latest imaging studies. Participation in the Health Fair is for informational purposes and does not create a provider-patient relationship.
Health Fair applications are due April 14. Individuals who submit applications will receive notification about the status of a Health Fair appointment by May 14. All applicants must submit pertinent medical records by June 2. Information on where to send the records is listed in the Health Fair application.
Priority will be given to first-time attendees of the Health Fair as well as other criteria. Applying to attend the Health Fair does not guarantee an appointment. Health Fair screenings take place all day on Thursday, July 10, 2025, and Friday, July 11, 2025. On Thursday, echocardiograms, eye exams, and lung function testing will be performed. All other evaluations take place on Friday. All screenings will take place at Children’s Healthcare of Atlanta’s Center for Advanced Pediatrics in Atlanta. Transportation from the hotel to the Health Fair and back will be provided.
Individuals must be registered for Conference to attend the Health Fair. However, anyone applying for a scholarship who also plans to submit a Health Fair application should wait until they have received their scholarship determination before registering for Conference. You may submit a Health Fair application prior to registering for Conference.
If you plan to attend the Health Fair, please arrange for an appropriate arrival time in Atlanta. If you have not had a recent echocardiogram, lung function test, and/or eye appointment, assume you have an 8:00 a.m. appointment on Thursday. If you have had a recent echocardiogram, lung function test, and eye appointment, assume you have an 8:00 a.m. appointment on Friday. Health Fair attendees will not be notified of their actual appointment time until 1-2 weeks before the event, and appointment times will not be adjusted once set.
Use the link below to download and save the Health Fair application and begin completing it.
SCHOLARSHIPS
-
CONFERENCE ATTENDEE SCHOLARSHIP PROGRAM
- Scholarships are available to help offset the cost of registration and hotel accommodations for Conference attendees with financial and/or medical needs. Scholarships are awarded based on the completion and evaluation of the scholarship application, which must be submitted by April 14, 2025.
- Scholarships provide partial assistance, covering one adult registration and two hotel nights. Travel expenses, such as flights, train tickets, parking, rideshare fare, and gas, are not included. Children and teens attend free with one registered adult or scholarship adult.
- Scholarship recipients are required to use their own credit card to make room reservations at the hotel. Upon check-in, the cost of two hotel nights will be transferred to the Foundation’s master account. If a scholarship recipient cannot attend, they must notify the Foundation at conference@marfan.org before the conference. Failure to do so may affect eligibility for future scholarships. For any scholarship-related questions, please contact conference@marfan.org.
-
PHYSICIAN TRAVEL SCHOLARSHIP PROGRAM
The Dr. Reed Pyeritz and Ms. Jane Tumpson Marfan Conference Physician Travel Scholarship was established to provide travel support to graduate students, postdocs, and early career healthcare professionals to attend the Marfan Foundation’s Health Fair and Conference. The recipient will receive up to $1,250 in travel and lodging expenses in addition to a complimentary conference registration.
For more details and to access the application, visit: https://marfan.org/events/conference/travel-scholarship/.
HOTEL & TRAVEL
The 2025 conference will take place at:
Hyatt Regency Atlanta
265 Peachtree Street NE
Atlanta, GA 30303
404-577-1234
-
Hotel Accommodations
Conference attendees must book their rooms directly with the hotel by Wednesday, June 18, 2025, to secure the discounted rate. The discounted rate is $189.00 per night plus occupancy tax and fees for a room with up to two guests. The rate increases if three or four guests occupy one room. It is recommended that you do not wait until the last day to book your hotel rooms, as the number of discounted rooms is limited. The discounted rate is available three days before and after the conference, subject to availability.
-
Valet Parking
Valet parking at the hotel is available for $60 per night in a protected underground garage with 24-hour access and in/out privileges. Vehicles are picked up in the Motor Lobby (Level LLF3, Atrium Tower). Due to high demand, valet parking may be limited.
-
Self-Parking
Although the hotel does not offer official self-parking, Hyatt guests may elect to self-park at designated off-property locations. Parking in any open, unsecured lots is not recommended.
-
Travel by Air or Rail
The Hyatt Regency Atlanta is 11 miles from Hartsfield-Jackson Atlanta International Airport (ATL) or three miles from Amtrak’s Peachtree Station.
-
Public Transportation
MARTA trains are conveniently connected to the Atlanta Hartsfield-Jackson International Airport next to baggage claim. The Red and Gold lines reach the Peachtree Center MARTA Transit Station, connected to the Hyatt Regency Atlanta through the Peachtree Center Mall, in about 25 minutes.
For a list of events and attractions near the hotel, click here.
Conference Volunteers
Conference attendees interested in volunteering a small portion of their time at the event can sign up for a variety of activities, including stuffing conference tote bags, greeting attendees as they arrive, helping people find their breakout rooms, and more. Individuals must register for the Conference to serve as volunteers.
There are many opportunities for you to volunteer at the conference. Be on the lookout for a sign-up soon!
Atlanta Camp Victory for Kids
Don’t miss out on this opportunity for your child/children, ages 7-16, to attend Camp Victory for Kids. This five-night camp is designed for kids with Marfan, VEDS, Loeys-Dietz, and related syndromes and their siblings to participate in a traditional overnight camp in a safe and accessible setting.
This year, because of our 40th Conference in Atlanta leading up to camp (July 11-13), we will offer a bus for campers from the conference site (Hyatt Regency, Atlanta) to Camp Twin Lakes.
Registration fees have been significantly discounted thanks to the support of our generous donors, including Camp Twin Lakes. Scholarships are available to cover the registration fee, which includes lodging, meals, and activities.
To apply for financial support, please click here. Scholarship applications for this camp are due May 19.
Please get in touch with Andrea Friedman, MSW, at afriedman@marfan.org for more information.
