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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.
IMPORTANT DATES & DEADLINES
- April 14, 2023 – Deadline for conference scholarship & Health Fair Applications
- May 15, 2023 – Scholarship recipients and Health Fair attendees notified
- May 31, 2023 – Early registration deadline (reduced fee)
- 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
For more detailed information about these programs and to register, please click here.
FEES & REGISTRATION
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Early Adult Conference Registration
$400 – Covers 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).
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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.
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Adult Conference Registration – Saturday Only
$250 – Covers admission to Saturday conference events – breakfast, general session, lunch, medically focused workshops, and Victory Party.
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Adult Conference Registration – Sunday Only
$100 – Covers admission to Sunday conference events – breakfast and mental health workshops.
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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.
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Creating Connection Luncheon
$50 – Cost to attend the Creating Connections Luncheon on July 15, 12pm, for anyone who will NOT attend the conference.
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Victory Party
$50 – Cost to attend the Victory Party on July 15, 7:30 pm, for anyone who will NOT attend the conference.
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Health Fair Registration for Medical Professionals
$200 – Covers participation as a Health Fair observer on July 14, 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 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 are due on April 14. No applications will be accepted after this date. Applicants will receive notification about the status of a Health Fair appointment by May 15. Pertinent medical records must be received by June 1. 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. Health Fair screenings take place all day on Thursday, July 13, 2022, and Friday, July 14, 2022. 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.
Download and save the application below to begin completing it.
Please Note: After you complete your application please upload it here to submit.
SCHOLARSHIPS
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CONFERENCE ATTENDEE SCHOLARSHIP PROGRAM
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 is 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.
Click here for more details and to access the application.
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 mmischner@marfan.org before the conference; otherwise, you may be ineligible to receive scholarships in the future.
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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 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.
HOTEL & TRAVEL
The 2023 conference will take place at:
Palmer House Hotel
17 E. Monroe Street
Chicago, IL 60603
312-726-7500
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.
A list of volunteer opportunities and sign-up for specific time slots will be coming soon.
