Malan Syndrome Family & Scientific Engagement Conference 2024

July 12, 2024 @ 3:00PM — July 14, 2024 @ 12:00PM Eastern Time (US & Canada)

Drury Plaza Hotel Disney Springs : 2000 Hotel Plaza Blvd Lake Buena Vista, FL 32830 Get Directions

Malan Syndrome Family & Scientific Engagement Conference 2024 image

Become a sponsorfor our 2024 Family and Scientific Engagement Conference.


We are excited to host our 2024 Family and Scientific Engagement Conference in Orlando, Florida!! This 3-day event aims to bring families and the scientific community together in the spirit of collaboration and shared learning.

The Malan Syndrome Foundation believes that connecting families with scientific knowledge and fostering a supportive community are essential in continuing our mission to improve the lives of all those living with Malan syndrome. Your participation in this conference will contribute significantly to this shared vision.

The Conference will begin on Friday, July 12th, and end Sunday, July 14th.

This year we will host our research roundtable (closed meeting, by invite only) on Friday, July 12th from 12-5pm EST, where leading scientists and clinicians will present and share the most recent findings on NFIX and Malan syndrome.

Check-in will begin at 3pm EST on Friday, July 12th. A Welcome Dinner is planned for 6pm EST on Friday evening. Educational and advocacy seminars will be scheduled for Saturday, July 13th from 9am- 4:30pm EST.

Hotel information

The conference will be held at the Drury Plaza Hotel in Disney Springs at 2000 Hotel Plaza Blvd, Lake Buena Vista, FL 32830. The cost will be $179/night (resort fee waived), which includes complimentary breakfast and an evening kickback buffet each night from 5:30-7:30PM. Suites are available at a higher rate.

A tour of the hotel is available here.

Make your hotel reservations easily online by clicking here and entering Disney Springs and using group code:10070522 (see image below) or by phone:1-800-325-0720 using group number: 10070522. If you have special requests, such as a preference for a handicap accessible room on a low floor or adjoining rooms, please make sure to include this request when making the reservation. It is important to indicate how many adults and children will be occupying each room.

The conference rate is available Tuesday, July 9, through Wednesday, July 17, 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.

The parking fee at the hotel is reduced to $15/day.


Orlando International Airport (MCO) is 17 miles away and a short 24 minute trip to the hotel. Ground transportation is available. For more detailed information about ground transportation and fares, please visit:



Q: When and where is the Malan Syndrome Foundation (MSF) Family and Scientific Engagement Conference?

A: The MSF Family and Scientific Engagement Conference will be held on July 12-14, 2024, in Orlando, Florida. The Conference will take place at the Drury Plaza Hotel Orlando located at 2000 Hotel Plaza Boulevard, Lake Buena Vista, Florida 32830.

Q: Who should attend the Conference?

A: The MSF Family and Scientific Engagement Conference is open to any family and caregiver that is currently impacted by Malan syndrome as well as physicians and scientists that are looking to either share their research or learn more about this rare genetic disorder.

Q: What are the objectives of the Conference?

A: Our objectives are to:

• Connect the global patient, family and scientific community.

• Provide a forum for all to learn through information sharing and discussion.

• Determine research and treatment priorities.

• Continue to grow the Foundation’s outreach and presence.

Q: Why should professionals attend the conference?

A: Professionals should attend for an opportunity to share their research and findings as well as further their own knowledge through listening to guest speakers and meeting families and patients. A list and schedule of participating speakers will be provided closer to the conference date.

Q: Why should family members attend the conference?

A: Our conference enables family members to learn practical strategies for meeting the challenges of Malan syndrome and improving outcomes for individuals of all ages. The conference connects families and caregivers to resources and other families living with a common experience.

Q: Why should individuals with Malan syndrome attend the conference?

A: Over 40+ families are expected to attend the conference. It's an amazing opportunity for those individuals with Malan syndrome to meet and get to know others living with Malan syndrome.

Q: I’m interested in being a conference sponsor, exhibitor and/or advertiser. How do I get more information?

A: Click here to become a Conference Sponsor. If you are interested in being an exhibitor, please send an email to:

Q: What types of sessions will be available at the conference?

A: On Friday, July 12, 2024, proceedings will commence with the Research Roundtable from 12:00-5:00pm, where the leading scientists and clinicians will present and share the most recent findings. This is a closed, invite only session.

Registration starts at 3:00pm, with the welcome dinner planned for 6:00pm.

On Saturday July 13, the educational and advocacy seminars will run from 9:00am - 4:30pm.

The conference will conclude on Sunday, July 14. There is no formal agenda for Sunday. Families will meet at the pool/splash pad for Family Fun Day.

Q: How do I register?

A: Registration opens on October 1, 2023.

Q: How much is registration?

A: Early Bird registration will be open from October 1, 2023 - April 15, 2024.

The price includes welcome dinner, admission to education and advocacy seminars, Saturday lunch, family entertainment and 1 swag bag per family.

Early Bird Registration pricing:

Adults (ages 18 & up): $100

Children (ages 4-17): $50

Children (ages 0-3): Free

Malan Sunflower: Free

*Additional Fee for Sunflower Camp for ALL attending, including Malan Sunflowers and siblings*

Early Bird Sunflower Camp pricing:

Ages 1 year - adult: $50 per person

Sunflower Camp will run Saturday, July 13 from 8:30am - 5:00pm

A: General Admission Registration will be open from April 16, 2024- June 15, 2024

General Admission Registration pricing:

Adults (ages 18 & up): $150

Children (ages 4-17): $75

Children (ages 0-3): Free

Malan Sunflower: Free

General Admission Sunflower Camp pricing:

Ages 1 year - adult: $100 per person


Sunflower Camp will run Saturday, July 13 from 8:30am - 4:30pm

A: Late Admission Registration will be open from June 16, 2024- June 30, 2024

Late Admission Registration pricing:

Adults (ages 18 & up): $200

Children (ages 4-17): $100

Children (ages 0-3): Free

Malan Sunflower: Free

Q: Who needs to register?

A: EVERYONE! All adults (parents, relatives and caregivers) and all children that plan to eat at the conference and enter the conference ballroom will need to be registered. Conference badges are required to enter the ballroom.

Q: Can I bring my children with me?

A: Yes, Malan children and their siblings are welcome and encouraged to attend. All children over the age of 1 that plan to participate in childcare (Sunflower Camp) will need to be registered for both the conference and camp.

Q: I registered for the conference, and I am now unable to attend. Can I transfer my registration to another person or cancel it?

A: We will refund tickets if requested 30 days before the start of the conference. No refunds will be issued thereafter. We appreciate your understanding.


Q: Who will be providing childcare?

A: We have partnered with Corporate Kids Events to provide childcare on Saturday, July 13th, so adults can attend the conference seminars. No children over the age of 1 will be allowed in the conference room during presentations.

Q: What will be the staff to child ratio for childcare?


-Individuals with Malan syndrome: 1 adult for 2 sunflowers.

-Infants (1 to 2 years): 1 adult for 2 children.

-Children 3 - 5 years: 1 adult for 4 children.

-Children 6 - 12 years: 1 adult for 6 children.

-Children 13 - 17 years: 1 adult for 8 children.

Q: Will a nurse be on-site during childcare?

A: We are currently looking into volunteer nurse staff from the local hospital.

Hotel and Meals

Q: What days are the hotel discounts for?

Discounted rooms are available from Tuesday July 9, 2024 to Wednesday July 17, 2024.

Q: Is the hotel included in registration?

A: No, the hotel is not included in registration. You will need to make your hotel reservations separately by using the following link:

Conference Hotel Booking

Drury Plaza Hotel Orlando

Group Code: 1007052

Q: Will food be provided?

A: As part of the booking package, hot breakfast is included.

In the evenings, there is the 5:30pm Kickback with a variety of free hot foods and cold beverages (included with stay). The menu changes daily. The MSF welcome dinner will be held on Friday evening and lunch will be provided on Saturday during the conference.

Q: Will options be available for those with food allergies during meals?

A: Yes, please enter all allergies when filling out your registration questions. The meals will be buffet style. There will be vegetarian and meat options. If you or your child have a serious food allergy, we highly encourage you bring your own food items that are safe to eat.

Q: Is parking included?

A: Parking will be available at a discounted rate of $15 per day.

Q: Will the outdoor pool be open?

A: Yes, the outdoor pool will be open during the conference dates from 8:00am - 11:00pm.

Q: What are some of the room amenities included in the reservation?

A: There is a microwave and refrigerator in each room. Click Room amenities for a full list of what is included in the rooms.

Q: Is Wi-Fi available?

A: Yes, free Wi-Fi is available throughout the hotel.

Q: Are pets allowed?

A: Yes, rooms with pets will be charged a daily fee of $50 per room plus tax. Service animals are free of charge (proper certificate to be presented at check-in). Limit of two pets per room with a combined weight of 80 pounds.

Q: Is there a restaurant on-site?

A: There are 3 restaurants/food options available in the hotel.

The Kitchen and Bar, Mon - Sat 5:00pm - 12:00am, Sun 5:00pm - 11:00pm.

The Lakeside Bar & Grill, 11:00 am - 10:00pm daily.

Pizza Hut Express, 11:00am - 12:00am daily.

Q: What amenities does the hotel have?

A: Three Restaurant options, Fitness Center, Entertainment Arcade, Outdoor Saltwater Pool, Whirlpool & fully fenced in Splash Pad, Convenience store, Dry Cleaning, Gift Shop, Business/Meeting spaces, free shuttle bus to Disney resorts.


Q: What are the closest airports to the conference hotel?

A: Orlando International Airport (MCO) is the closest airport.

Q: How far is the airport to the hotel?

A: Orlando International Airport, 1 Jeff Fuqua Boulevard, Orlando, Florida 32827 is approximately 18 miles away, approximately 25 minute drive.

Q: How do I get from the airport to the hotel?

A: Ground transportation and car rental locations are available at all airports. Advanced reservations may be necessary.

Airport transportation Orlando

Disney Hotel coach transfers can be booked in advance via Mears Connect from Orlando International.


Q: Where is the nearest hospital?

A: The closest hospital is Orlando Health Emergency Room and Medical Pavilion - Osceola. It is 12.2 miles from the hotel. The address is 1001 E Osceola Pkwy, Kissimmee, FL 34744.

Q: Where is the nearest pharmacy?

A: The nearest pharmacy is Sandlake Pharmacy, 7300 Sand Lake Commons Blvd #225, Orlando, FL 32819. It’s 5.0 miles from the hotel.

Q: If we have a serious medical emergency, who do we call?

A: We recommend calling 911 and waiting for emergency services to give further Instructions.

Q: What are the COVID-19 protocols?

We will follow the CDC and local/state guidelines.

Florida Health Covid 19 Guidelines

*Click the pictures to access links*

Click here to view the Activity Guides

Click here for the PDF for Special Convention Theme Park Tickets


Thank you to our 2024 Sponsors!

Game Changers

S2K Consulting


Sachem Capital Corp



ADH Insurance Agency

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Ticket Details

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