2024 1p36 Annual Conference & Hotel Information

Conference Registration is open NOW! Register here

Conference Scholarship Information and application

The 16th annual 1p36 Deletion Support & Awareness conference will be held in Westminster (Denver), Colorado. Conference dates will be Thursday, August 1^st through Saturday, August 3^rd, 2024.  The conference hotel is in Westminster, a suburb of Denver, only 30 miles from Denver International Airport and 95 miles from the Colorado Springs Airport. The Westin, Westminster is a gorgeous venue with beautiful guest rooms and meeting spaces, a full workout/fitness studio, an indoor heated pool and of course, incredible views of the majestic Colorado Rocky Mountains. The hotel is also very conveniently located within a short walk of many dining and retail establishments.

2024 conference hosts, the West Family, in collaboration with the Board, is working hard to organize and facilitate an incredibly memorable, life-giving weekend!  There will be activities for everyone, including a Mom’s Night Out, Dad’s Night Out, and even a special Sibling Event. A speaker line-up of medical professionals, genetics experts and other pertinent service providers will offer valuable information, research and clinical studies, as well as resources and ideas, all relevant to 1p36 Deletion Syndrome. Families and caregivers will be educated, empowered and inspired, enabling them to be stronger advocates for their loved ones. Every 1p36 conference is an amazing opportunity to be surrounded by people that truly understand what loving and caring for someone with 1p36 deletion syndrome is really like. Life-long friendships are forged and cultivated with people, spanning across diverse cultures, backgrounds and beliefs, all brought together and bonded by some missing DNA on the 1^st chromosome.

An exclusive group rate of $149/night for standard rooms (1 King or 2 Double Beds) has been negotiated at the Westin, Westminster (taxes and fees not included). The venue offers complimentary basic, high-speed, wireless internet in guestrooms and meeting space as well as complimentary self-parking for all attendees. The group rate is available for up to 3 days before and 3 days after the conference. Book your reservation for the hotel now by clicking here.  If you would like to extend your stay, you may call the hotel directly to check availability at (303) 410-5000 and ask for the 1p36 Deletion Support and Awareness room rate.

For those who would like to venture out a bit and enjoy more of what Colorado has to offer:

-90 minutes to Rocky Mountain National Park and Estes Park
-30 minutes to the Denver Museum of Nature and Science and the Denver Zoo
-15 minutes to Downtown Denver and Empower Field at Mile High
-15 minutes to Downtown Boulder and CU Boulder
-90 minutes to The United States Air Force Academy, Garden of the Gods, Cheyenne Mountain Zoo, Pikes Peak and the cog railway, and the United State Olympic and Paralympic Museum 

For more information about Colorado sites and attractions, visit www.colorado.com.

For more information about Denver’s sites and attractions, visit www.denver.org

Introducing the 2023 1p36 DSA Conference

Click the link below to get tickets to the 2023 1p36 DSA Annual Conference

Buy Tickets  

The 15th annual 1p36 Deletion Support & Awareness conference will be held in Detroit, MI, also known as “Motor City”, home of the automobile industry, beautiful Great Lakes shorelines, and Motown. The conference will run Thursday, August 3rd through Saturday, August 5th, 2023.  The conference hotel is in Novi, MI, a northern suburb of Metro Detroit and just a 30-min drive to Downtown Detroit, Home of the Detroit Tigers, Lions, Pistons, and Red Wings. Detroit Metropolitan Wayne County Airport is only 25 minutes away from the hotel.

The 1p36 Conference hosts and Board are working hard to organize an amazing weekend with activities for the entire family as well as activities for Siblings, Moms and Dads. A team of medical professionals, genetic experts and other specialists will share information, research, and clinical studies relevant to 1P36 Deletion Syndrome, to educate our families and caregivers, and enable them to be stronger advocates for their loved ones. The annual 1P36 conference is also all about cultivating lifelong friendships with people and family from a multitude of diverse backgrounds and geographies, yet share one thing, a crucial chromosome thing, in common that brings us all together.

A special group rate of $129/night for standard rooms (1 King or 2 queen beds) has been negotiated at The Sheraton Detroit Novi with free Wi-Fi and parking. (taxes and fees not included).  Book your group rate for 1p36 Deletion Support and Awareness Conference. The group rate is available for up to 3 days before and after the conference.  If you would like to extend your stay, you may call the hotel directly to check availability at 248-349-4000 and ask for the 1p36 Deletion Support and Awareness room rate. Hotel reservations are currently available and must be made by Wednesday, July 12, 2023 to get the conference rate.

The Sheraton Detroit Novi is ideally located in a suburb of Metro Detroit, just a short distance away from many restaurants, golfing, shopping centers, pharmacies, and hospitals. For those that want to venture further into Metro Detroit locations, there are many local breweries within a short driving distance. The Sheraton Detroit Novi also offers a pool, fitness center, and the Novi Craft House restaurant and Bar. Check out VisitDetroit  to see what all the Motor City has to offer while you are visiting.

2022 1p36 Conference and Scholarship Information

Update: Registration Deadline is June 30th. https://1p36conference2022.eventbrite.com

The 2022 1p36 DSA Conference is coming up July 28-30th at the Charlotte Westin in Charlotte, NC. All Conference information can be found on the conference information page. 1p36 Deletion Support & Awareness is also happy to be able to offer 6 conference scholarships for first time attendees. The scholarship application can be found here. Applications must be received by March 20, 2022.

Registration is Open Buy Tickets Now!

CoRDS Registry

1p36 Families—we need your information!!  1p36 Deletion Syndrome is now part of the CoRDS Registry. Our goal is to collect information on as many 1p36 individuals as possible (of all ages) so that there will be one central resource that will help research into 1p36 Deletion Syndrome. The Coordination of Rare Diseases at Sanford (CoRDS) is a centralized international registry for all rare diseases. The registry is run by Sanford Research in Sioux Falls, SD, USA. The CoRDS registry is free for patients to enroll and for researchers to access.

Patient registries are designed to collect, store, and curate data on patients to be used for a specified purpose. They can be tools to establish natural history studies, establish prevalence, and connect patients with researchers who study their disease. The CoRDS registry for 1p36 Deletion Syndrome will house basic contact and clinical information for any individual enrolled.  Please note that once you fill out the registry, no information will be shared with anyone without the permission of the 1p36 DSA.

 To have your child be part of the registry, please use this link:   https://cordsconnect.sanfordresearch.org/BayaPES/sf/screeningForm?id=SFSFL.  Note that our Angel Families are also welcome to participate in the registry!!  This link takes you to the Screening Form.  Indicate if you want to fill out information online or by mail. Be sure to select that you found out about the registry through 1p36 Deletion Support & Awareness.  

• If you choose to submit info online, you will receive an email with instructions on how to do this, including a username and temporary password.
• If you choose to submit information by mail, you will be mailed an information packet (including a pre-paid return envelope) with the materials you will need to enroll your child.

The CoRDS registry process is designed to be simple and user-friendly.  If you have any questions about this process, please contact cords@sanfordhealth.org or call them at 1-877-658-9192.

Once you have enrolled, you will be contacted annually by CoRDS personnel to update your information.

CoRDS takes your privacy and security very seriously.  You can find more information about their security measures on the CoRDS website.

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2019 1p36 DSA Conference at Snowbird Resort Utah

The 2019 1p36 DSA Conference is coming up August 1-3, 2019 at Snowbird Resort, Utah. All Conference information can be found on the conference information page. 1p36 Deletion Support & Awareness is also happy to be able to offer 6 conference scholarships for first time attendees. The scholarship application can be found here. Applications must be received by April 28th, 2019.