If you have a 7q11.23 Duplication Resource in your country, please contact us and we’ll add it to our resource list.
Private Facebook Support Groups
- Private Adult Support Group: Duplication Cares is committed to supporting families with children diagnosed with 7q11.23 Duplication Syndrome
- Private Teen / Young Adult Group: For individuals between the ages of 12 and 25 with 7q11.23 Duplication. This is a safe place for you to meet to socialize and get to know one another.
Countries
Canada
- Canadian Organization for Rare Disorders (Canada). They also have a Facebook Page and currently advocating at the Federal Government level for a National Registry Program. raredisorders.ca
- Childhood Apraxia Society of Edmonton
- FOR CANADA FAMILIES: please email 7qdupcanada@gmail.com for the Canadian Representative of 7q11.23 duplication.
- Federal/Provincial Resources
USA
For example, Parent Resource Centers in the United States, serve families of children of all ages (birth through adulthood) with all disabilities; physical, cognitive, behavioral, social, and emotional. Once you locate your state’s parent center you can gain assistance with anything from a school IEP question or concern to medical resources and programs available for your child. Parent Centers across the United States share information and resources with each other. The following link a database full of information. Type your topic or area of concern into the search engine. Information from all of the nation’s parent centers will be sorted to help you find answers. This is also a resource available for individuals living outside of the United States.
- National benefits (Medicaid, SSI, Disability Benefits), resources and insurance information, (coding etc) This is specific to the USA.
- Therapy is key! Learn about your insurance coverage. What therapies are covered? (Speech, Occupational Therapy, Physical Therapy, Mental Health Benefits, Social Skill Therapy, and Sensory Integration Therapy) How many therapy visits are allowed per year? Find qualified therapists and doctors in your network? Become familiar with diagnosis codes and billing codes. Certain diagnosis codes may not be covered under your plan.
Known Diagnosis Codes:
758.50: Trisomy 7 with duplication
315.39: Speech Articulation
315.31: Speech Expressive
440.35: OT Evaluation
CPT Billing Codes:
92507: Speech Services
97110: Physical Therapy Services
97112: Neuromuscular Re-education
97530: Therapeutic Activities
97533: Sensory Integrative Techniques
97535: Self Care
97003: OT Evaluation
92626: Cap Testing – 1st hour
92627: Each additional 15 minutes after the first hour