Dup15q International Family Conferences
Dup15q Alliance International Family Conferences are held every other year to provide families with an opportunity to meet and learn. We connect families and professionals, from the US and internationally, to provide pertinent information regarding Dup15q Syndrome advances and treatments. Tailored to benefit the entire family, our conferences include scientific, genetic and clinical discussions, respite care, sibling sessions and group activities. Sessions will be held on the latest research, treatment and therapies with views from clinicians, providers and parents. Break-out sessions have also been organized for Moms and Dads that offer a wonderful opportunity to gather with other parents and share the challenges, fears, hopes and successes of raising a family with Dup15q in the mix. These honest exchanges bring both tears and laughter, and most of all, the healing of knowing that you are not alone in your experience parenting a child with Dup15q.
We are excited to announce that our family conference will look a little different this year, but we are hoping it will be even better. This year we are hosting a joint conference between Dup15q Alliance, Project 8p, and Ring14 USA. We believe we can do more together!
Family Conference 7/7/21-7/9/21
Westin Hotel-Westminster, Colorado
*Lots of outdoor space, walking paths and handicapped accessibility
Registration: $200 for adults/ $100 for children/ Free for those with diagnosis
In-person Registration includes Breakfast, Lunch and Dinner for Wednesday + Thursday. Breakfast and Lunch for Friday.
Virtual Ticket: $100
Includes Live Streaming of all 3 days and 1 Swag Bag (Additional bags can be purchased separately).
Hotel: Westin Hotel-Westminster: rates secured at $149 per night
After you register you will receive a link to book your hotel. That link will already include the discount code.
Clinic visits available at the 15q CRN Clinic at Children’s Hospital Colorado
July 6th – We have 12 clinic visit openings available to families who have limited access to appropriate medical care for their child’s needs.
The purpose of these clinic visits would be to guide specific medical care concerns and work with your local physicians.
*Clinic opportunities are also available for Ring14 and Project 8p families.
To learn more or schedule an appointment, contact Zoe at email@example.com
Family Conference Travel Scholarship opportunity:
Rare Disease Educational Support Program: NORD Disease Educational Support Program provides reimbursement for registration costs for rare disease-specific educational offerings, as well as programs that support patients’ health and well-being, such as workshops, nutrition classes and conferences. In addition to assisting with registration fees, program provides limited financial assistance to patients and caregivers for travel and lodging costs.
The Dup15q Alliance, Project 8p and Ring14 USA communities share very similar life experiences – our children face many of the same challenges, our parents have many of the same questions. We can answer these common questions more effectively together.
All 3 communities are neurodevelopmental disorders that have large chromosome copy number changes (duplications, deletions and/or rings) that involve multiple genes. To investigate and accelerate therapeutic developments in complex genetic changes, these communities developed the “Commission for Neurodevelopmental Copy Number Variants (CNVs)” funded by the Chan Zuckerberg Initiative. Since this commission is pushing for cross-syndrome therapies, we want the clinicians to see how similar our children are.
Thus, we are coming together in Colorado to tackle our common challenges. Teaming up to bring more information, to share resources, and to stream our conference worldwide for the first time. We will be all together when it makes sense, but we will also meet separately to address unique issues and to encourage community within each association. We want to deliver big conference content while maintaining the small conference experience.