Malan Syndrome Family and Scientific Engagement Conference
July 22-24, 2022

Sheraton Chapel Hill 
Chapel Hill, North Carolina

Registration is now open!


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Hotel Exterior
Hotel Exterior

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The Malan Syndrome Foundation is proud to host the first Malan Syndrome Family and Scientific Engagement Conference. This event will bring Malan syndrome patients, families and caregivers together with leading geneticists, clinical specialists and scientists to learn, share and build community.  We are very excited about this event and hope it will be a rewarding experience for all those in attendance.  

The conference is a 3-day event, beginning Friday, July 22nd, and ending Sunday, July 24th. Check-in will begin at 3pm on Friday, July 22nd. A Welcome Dinner is planned for 6pm on Friday evening. Educational and advocacy seminars will be scheduled for Saturday, July 23rd from 9am- 5pm, followed by a Family Dinner at 6pm. There will be a Family Breakfast on Sunday, July 23rd with concluding remarks and a group photo. The conference will end at noon on Sunday, July 24th.

Click button to register.

Hotel information

The conference will be held at the Sheraton Chapel Hill Hotel in Chapel Hill, North Carolina. We have secured a block of rooms at the discounted rate of $125/night (+tax).

A tour of the hotel is available here.

Make your hotel reservations easily online by clicking here to secure the conference rate. If you have special requests, such as a preference for a handicap accessible room on a low floor, please make sure to include this request when making the online reservation.


The conference rate is available Tuesday, July 19, through Wednesday, July 27, for those wishing to arrive early or extend your stay. Reservations can be made now. Be sure to reserve your rooms early to guarantee a spot in our block with the discounted rate. Reservations will be subject to space and rate availability at the hotel, which may sell out as it is a high demand time of the year.

Free parking is available at the hotel.


Raleigh-Durham International Airport is located 30 minutes away from the conference hotel in Chapel Hill. Charlotte Douglas International Airport is 130 minutes away from the hotel. Ground transportation is available at both airports. For more detailed information about ground transportation and fares, please visit:

Thank you to our sponsors!

Game Changers ($5,000+)


Champions ($2,500+)


Katie and Daniel Steuck

Promoters ($1,000+)


The Carta Family

Noah Ivelic's Godmother and Fan Club

Supporters ($500+)

Jim and Ellen Campbell

Debbie and Dennis Steuck

Friends and Family ($100+)

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The James-Peet Family

In-kind Donations

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