Malan Syndrome Foundation Family and Scientific Engagement Conference 2022
July 22, 2022 @ 3:00PM — July 24, 2022 @ 12:00PM Eastern Time (US & Canada) Add to Calendar
Sherarton Chapel Hill Hotel: 1 Europa Dr Chapel Hill, NC 27517 Get Directions
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- 4:30pm, 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.
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.
Travel
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 all airports. For more detailed information about ground transportation and fares, please visit: https://www.rdu.com/ground-transportation/
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KNOW BEFORE YOU GO! (FAQ 2022)
General
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 22-24,2022 in Chapel Hill, NC. The Conference will take place at the Sheraton Chapel Hill located at 1 Europa Drive - Chapel Hill, NC 27517.
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. See the schedule for a list of participating speakers.
Q: Why should family members attend the conference?
A: Our conference enables family members to learn practical strategies for meeting and exceeding the challenges of Malan syndrome and improving outcomes for children of all ages. The conference connects families and caregivers to resources and other families.
Q: Why should individuals with Malan syndrome attend the conference?
A: Over 35+ 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 with the same disorder.
Q: I’m interested in being a conference sponsor, exhibitor and/or advertiser. How do I get more information?
A: Please see the sponsorship packet available to the right of this page. We also have the sponsorship packet available on Malansyndrome.org
Q: What types of sessions will be available at the conference?
A: On Friday, July 22, 2022, registration starts at 3:00PM with dinner starting at 6:00pm. The seminars start at 9:00am - 4:30PM on Saturday July 23, 2022. The conference will conclude on Sunday, July 24,2022 at 12pm.
Q: How do I register?
A: Registration opens on March 14th.
Q: How much is registration?
A: Early Bird registration will be open from March 14th- May 1st. This price includes all meals, conference admission, 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 23rd from 8:30am - 4:30pm
Q: Who needs to register?
A: 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 to attend. All children over the age of 1 that plan to participate in childcare (Camp Sunflower) 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.
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Childcare
Q: Who will be providing childcare?
A: We have partnered with Corporate Kids Events to provide childcare on Saturday, July 23rd, 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?
A: -Children with Malan syndrome: 1 adult for 2 children;
-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.
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Hotel and Meals
Q: What days are the hotel discounts for?
A: The hotel gave discount rooms for Tuesday July 19th, 2022 - Wednesday July 27,2022 though the conference is only from July 22-24, 2022
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: https://www.marriott.com/event-reservations/reserv...
Q: Will food be provided?
A: Yes, all meals will be provided 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 has a serious food allergy, please consider bringing food items that are safe to eat.
Q: Is parking included?
A: Yes, complimentary outdoor daily self-parking is available
Q: Will the outdoor pool be open?
A: Yes, the outdoor pool will be open during the conference dates.
Q: What are some of the room amenities included in the reservation?
A: Click here for a list of room amenities -https://www.marriott.com/event-reservations/reserv...
Q: Is WiFi available?
A: Yes, free High-Speed Internet / Standard Wireless Internet service is included for all guests.
Q: Are pets allowed?
A: No pets allowed unless they are service animals with proper certificate to be presented at check-in.
Q: Is there a restaurant on-site?
A: There is 1 restaurant, the Blue Corners Bistro & Bar located inside the hotel. Its open Mon-Fri 6:30 AM-10:30 AM, Mon-Sat 6:00 PM-10:00 PM, & Everyday 11:30 AM-1:00 PM,7:00 AM-11:00 AM
Q: What amenities does the hotel have?
A: Restaurant, Fitness Center, Outdoor pool, Convenience store, Dry Cleaning, Gift Shop, Business/Meeting spaces
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Travel
Q: What are the closest airports to the conference hotel?
A: Raleigh-Durham International Airport is the closest hotel. Charlotte Douglas International Airport is an alternative.
Q: How far is the airport to the hotel?
A: Raleigh-Durham International Airport, John Brantley Blvd, Morrisville, NC 27560 is 17.8 miles away. Charlotte Douglas International Airport is 130 miles from airport
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.
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Health/Medicine/Emergencies
Q: Where is the nearest hospital?
A: The closest hospital is UNC Hospitals. It is 4.5 miles from the hotel. The address is 101 Manning Dr, Chapel Hill, NC 27514
Q: Where is the nearest pharmacy?
A: The nearest pharmacy is CVS Pharmacy at 1724 Fordham Blvd, Chapel Hill, NC 27514. It’s 0.6 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 happens if the current world situation gets in the way of international travel?
A: We highly recommended that everyone purchases travel insurance given the world's current events.
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**COVID POLICY**
Q: What are the COVID-19 protocols?
A: We will follow the CDC and local/state guidelines. https://www.townofchapelhill.org/government/newsro...
A big thank you to our sponsors!
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