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What is 1p36 Deletion Syndrome?


1p36 Deletion Syndrome is a chromosome disorder that can be characterized by moderate to severe intellectual disability, delayed growth, limited speech ability and distinct facial features. It is estimated that 1p36 Deletion Syndrome occurs in one in every 5,000 to 10,000 births though many individuals still go undiagnosed. Though many people have never heard of 1p36 Deletion Syndrome, it is the one of the most common chromosome deletions. Learn More

Entries in conference (7)


2016 Conference Registration and Scholarship Application

Registration for the 2016 1p36 Deletion Support & Awareness Annual Conference in San Diego, CA July 28-30th is now open. To go directly to the registration page you can go to for general information about the conference including hotel reservation information please click here.

We are also very proud to be able to offer 6 scholarships to attend the 2016 Annual conference. For more information and to fill out the application just go here.




Fundraising now for the 2016 1p36 DSA conference in San Diego, CA

1p36  is a syndrome that affects thousands of children, teens, adults and their families. 1p36 Deletion Syndrome affects up to 1 in 5000 births. It is a genetic condition where a small amount of genetic material is missing (deleted) at the tip of the short arm of the chromosome 1.

This missing chromosome results in a variety of issues, including:

·      Seizure disorder
·      Growth/feeding problems
·      Developmental and intellectual disabilities
·      Congenital malformations
·      Cardiomyopathy and thyroid issues

These are just a few of the many issues that affect those born with 1p36 Deletion Syndrome and their families.

Please help us bring families and communities together in support and hope.

The 1p36 Deletion Support & Awareness Organization will be holding its annual conference at the Four Points Sheraton in San Diego, CA from July 28th- July 30th, 2016.

This conference is the only one of its kind where parents and families of those with 1p36 Deletion Syndrome and medical professionals with an interest in the syndrome can come together from all over the world, under one roof, to learn the most current, recommended care and advocacy strategies and hear first-hand the latest in research.  All money donated goes directly to helping families in need.

Your generous donation can help change lives today — and tomorrow.

We need your help to make this conference a success. Our goal is to raise $20,000 to help cover the cost of putting on the conference. We are designated as tax-exempt under section [501(c) 3] of the Internal Revenue Code. Contributions are tax-deductible to the fullest extent of the law.

Thank you for supporting 1p36 Deletion Support and Awareness.


2015 Conference Preview

1p36 Deletion Support & Awareness is excited to announce the dates and location of the 2015 1p36 DSA Conference. The conference will be Thursday July 23rd through July 25th and will be hosted at The Wyndham Grand Orlando Resort Bonnet Creek in Orlando, FL.

The Wyndham Grand Orlando Resort Bonnet Creek is an upscale lakeside hotel surrounded by stunning woodlands and the alluring style of sun-kissed Orlando 20 minutes from the Orlando International airport. The Mediterranean-inspired hotel has Lagoon-style swimming pools with pool side cabanas, fire-pits, a pirate ship kiddie pool, lazy river, playgrounds, jogging trail, outdoor hot tubs, a game room and much more!  The hotel also offers three restaurants, two lounges and 24-hour room service.

We have secured a room rate of $139.00 per night plus tax for the conference. This includes access to the amenities already listed as-well-as high-speed internet access in guest rooms, use of the state-of-the-art fitness center and a complimentary shuttle to the Disney Parks and attractions. If you want to extend your stay, this rate is available for 3 days before and 3 days after the conference. You can call 407-390-2300 and mention the 1p36 Deletion conference or click here to make a reservation online. If you are making a reservation online and try to add nights outside of the Pre/post nights or if they have limited availability in pre/post nights it will show as unavailable. If this occurs please call the number above and they can assist you further.

If you did not already know, there is a lot to do in Orlando. The hotel is less than 5 miles from the Walt Disney theme parks including Magic Kingdom, Epcot, Disney’s Hollywood Studios and Animal Kingdom. Nearby, enjoy the shops, nightlife and entertainment thrills at Downtown Disney or Universal’s City Walk. To learn more about Orlando local attractions, visit the Visit Orlando website @

As we get closer to the conference, more information will be provided on meals, activities, events and speakers.  Registration for the conference will be available in early 2015. We are very excited about the 9th 1p36 DSA conference. We know it will be a magical event!


2014 Conference Registration and Scholarship information

1p36 Deletion Support & Awareness is pleased to announce that the 2014 conference registration is now open. You can click here to go to the registration page. Early bird prices will end May 15th. We can't wait to see everyone and it will be here before you know it. More details about the conference can be found on the conference page.

We are also offering scholarships to this years conference again. We firmly believe that attending a 1p36 DSA conference can be a life changing experience but know that it can be financially challenging for many families. That is why we have set up a scholarship program for those who have never had the chance to attend a conference. For details about the scholarship program please click here. Scholarship applications must be received by April 19th, 2014.


Registration for the 1p36 Annual Conference is now open