Know the Signs, Fight for Victory

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.

Please note that childcare/programming is not provided for children under five years of age.


  • April 14, 2023 – Deadline for conference scholarship applications
  • May 15, 2023 – Scholarship recipients and Health Fair attendees notified 
  • May 31, 2023 – Early registration deadline (reduced fee) 
  • June 2, 2023 – Deadline for Health Fair applications
  • June 21, 2023 – Last day to register for children and teen programs (note that the children’s program may fill before this date, so it’s best to register as soon as possible) 
  • June 21, 2023 – Deadline to book Palmer House hotel rooms at a discounted rate by 1 pm CT  

Conference Highlights

  • Step 1 Health Fair

    Thursday, July 13, and Friday, July 14, are our Health Fair days for those who would like to connect with expert healthcare professionals about their personal medical situation. By appointment only. See below for more information. 

  • Step 2 Welcome Dinner

    The Conference officially opens 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

    After a continental breakfast on Saturday, July 15, the General Session will feature the latest information on the new ACC/AHA guidelines for the management of Marfan syndrome, VEDS, and LDS for adults and children; aortic and vascular surgery; Gastroenterology in Connective Tissue Conditions; and mental health. 

    This session is also available virtually. You can register for this session here.

  • Step 4 Saturday Workshops

    Saturday afternoon, small-group workshops led by medical experts on Marfan syndrome, VEDS, LDS, and related conditions provide a more in-depth look at various topics related to your or your loved one’s diagnosis or medical concern. Please note that all workshops are open to all paid registrants regardless of their condition. Workshops are tagged to include conditions which commonly exhibit these symptoms. This is a great opportunity to have your questions answered by the experts. 

  • 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 Victory Party

    After dinner on your own on Saturday night, everyone can participate in our popular Victory Party. This fun event is for all ages! It will feature games, music, dancing, dessert, and much more. 

  • Step 7 Sunday Workshops

    After a continental breakfast on Sunday, July 16, small-group workshops will continue with topics related to mental health, supported care, 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 8 Teen Program

    Teens (ages 13-18) have a complete program designed for their needs and interests. On Friday, the teens meet for a group dinner to get to know each other. On Saturday they can ask their medical questions at a Q&A breakfast with several expert healthcare professionals before a day of workshops, fun activities, and a local field trip. That night, they’ll join their families for the Victory Party. On Sunday, teens will attend additional small-group workshops designed specifically for them. All activities promote friendship and self-esteem to complete their conference experience.  

  • Step 9 Kid Program

    Children (ages 5-12) have a complete program designed just for them. This year, camp is coming to conference! The children’s program will be run by our partner, Camp Joy. Children will have fun participating in camp activities adapted for the conference setting. On Friday, the children will meet for a group dinner to get to know each other through ice breakers and fun activities. On Saturday and Sunday, the children will enjoy games, crafts, science, and more. The children’s program is limited to 90 participants so please register early to ensure a slot for your child/children. 

Thursday, July 13, and Friday, July 14, are our Health Fair days for those who would like to connect with expert healthcare professionals about their personal medical situation. By appointment only. See below for more information. 

For more detailed information about these programs and to register, please click here


  • Early Adult Conference Registration

    $400Covers admission to all conference events – Welcome Dinner & Awards Ceremony (Friday), breakfast (Saturday), general session (Saturday), lunch (Saturday), medically focused workshops (Saturday), Victory Party (Saturday), breakfast (Sunday), and mental health workshops (Sunday). 

  • Virtual Guest Session

    $75 – View our Saturday morning general session virtually. This is the only program that will be available online.  

    Purchase tickets for this session here.

  • Adult Conference Registration – Saturday Only

    $250Covers admission to Saturday conference events – breakfast, general session, lunch, medically focused workshops, and Victory Party. 

  • Adult Conference Registration – Sunday Only

    $100Covers admission to Sunday conference events – breakfast and mental health workshops.

  • Welcome Dinner & Awards Ceremony

    $50 Cost to attend the Welcome Dinner & Awards Ceremony on July 14, 7 pm, for anyone who will NOT attend the conference. 

  • Creating Connection Luncheon

    $50Cost to attend the Creating Connections Luncheon on July 15, 12pm, for anyone who will NOT attend the conference. 

  • Victory Party

    $50 Cost to attend the Victory Party on July 15, 7:30 pm, for anyone who will NOT attend the conference. 

  • Health Fair Registration for Medical Professionals

    $200Covers participation as a Health Fair observer on July 14, as well as breakfast, lunch, and admission to the Welcome Dinner & Awards Ceremony. 


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 who are seeking a diagnosis or 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 most recent imaging studies. 

Health Fair applications will be accepted until June 2, 2023. Individuals who submit applications by April 14 will receive notification about the status of a Health Fair appointment by May 15. Pertinent medical records must be received by June 7 for all applicants. 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. Submitting an application does not guarantee an appointment. The Health Fair is a two-day event, and applicants are expected to attend both days. Health Fair screenings take place all day on Thursday, July 13, 2023, and Friday, July 14, 2023. 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 Ann and Robert H. Lurie Children’s Hospital of Chicago. Transportation from the hotel to the Health Fair and back will be provided.  

Individuals must be registered for the Conference in order to attend the Health Fair. However, anyone applying for a scholarship who also plans to submit a Health Fair application should wait to register until they have received their scholarship determination. You may submit a Health Fair application prior to registering for the Conference.  

If you plan to attend the Health Fair, please arrange for an appropriate travel time to Chicago. If you need an echocardiogram and/or eye appointment, assume you have an 8:00 AM appointment on Thursday. If you do not need an echocardiogram, lung function test, or eye appointment, assume you have an 8:00 AM appointment on Friday. Health Fair attendees will not be notified of their actual appointment time until 1-2 weeks before the event. 

In order to attend the Health Fair, Lurie Children’s Hospital’s COVID-19 policies must be followed. Please check back for updated information closer to the conference dates for any changes. Currently, the policy is as follows: 

  • TWO (2) parents/guardians are allowed to accompany each patient.
  • Patient’s siblings may attend the visit. No other children besides siblings are permitted to attend the visit. 
  • All patients, families, and visitors are required to wear a mask covering their nose and mouth at all times at Lurie Children’s facilities. All visitors are required to wear a mask at all times while present in the hospital and at all Lurie Children’s facilities. 
  • Anyone with symptoms of a viral illness such as fever, sore throat, cough, sneezing, runny nose, vomiting, or diarrhea will not be allowed to visit.  
  • All visitors must attest to no COVID-19 symptoms or exposures in the prior two weeks. 



    Scholarships are available to help defray the cost of registration and accommodations. They are awarded based on completion and evaluation of the scholarship application form, which was due by Friday April 14, 2023. 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. Scholarships do not cover travel such as flights, train tickets, or gas reimbursements. Children and teens are always free with one registered or scholarship adult.  

     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 the Foundation’s master account.  

    If you are unable to use your scholarship, you must notify the Foundation at before the conference; otherwise, you may be ineligible to receive scholarships in the future. 

    If you have any questions regarding scholarships, please email


    The Dr. Reed Pyeritz and Ms. Jane Tumpson Marfan Conference Physician Travel Scholarship was established to provide travel support to young physicians 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.  

    Click here for more details and to access the application.  


The 2023 conference will take place at: 

Palmer House Hotel 

17 E. Monroe Street 

Chicago, IL 60603 


Conference attendees must book their own rooms directly with the hotel to receive our discounted rates. The last day to book rooms and receive the discounted rate is Wednesday, June 21, 2023, by 1 pm CT. The discounted room rate will be available three days prior to and three days post-conference, based on hotel availability. Click here to book rooms at the discounted room rate. 

Overnight self-parking is offered directly across the street from the hotel, at 55 E. Monroe Street, for $52/night. Overnight valet parking is available at the hotel’s Monroe Street entrance for $75/night. 

The nearest airports to Palmer House Hotel are Chicago Midway International Airport (12 miles) and O’Hare International Airport (19 miles). If traveling by Amtrak, the nearest train station is Chicago Union Station (1 mile). 

The average cab fare from Chicago Midway International Airport to Palmer House Hotel is approximately $30 one way. From Chicago Midway International Airport to Palmer House Hotel, the cost via rideshare apps such as Uber and Lyft ranges from $15-45 one way. 

When taking public transportation from O’Hare International Airport, take the Blue Line train to Monroe/Dearborn stop. Take Monroe east to the hotel. The Palmer House is on the south side of the street. From Midway Airport, take the Orange Line from Midway to downtown. Get off at the Adams/Wabash stop. The Palmer House is located on the west side of Wabash Avenue. Please be aware that these are not accessible train stations (i.e., they do not have elevators).  

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

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, assisting people to their breakout rooms, etc. Individuals must register for the conference in order to serve as a volunteer.  

There are many opportunities for you to volunteer at the conference. Review the opportunities and sign up here.

Virtual Session

The General Session of this year’s Conference is available virtually (online). The topics to be covered are:

  • Understanding the New ACC/AHA Guidelines for the Management of Marfan Syndrome, VEDS, and LDS for Adults and Children
  • Advances in Cardiac Imaging
  • Aortic Surgical Options for Adults
  • When is Vascular Surgery an Option
  • Gastroenterology in Connective Tissue Conditions
  • Life with Aortic Disease: Caring for Your Mental Health

The cost is only $75 per log in. Watch from the comfort of your home. No travel is required!


Refunds of registration fees will be provided until June 13, 2023, minus a $50 processing fee. After this date, no refunds will be offered.