CARING - Care and Research in Neurogenetics Clinic at UCLA
”We kept bringing up our concerns to the pediatrician at every well-baby check-up, and he kept advising we wait it out. He insisted that boys are slower sometimes, and that we didn’t need to be concerned so early on.”
“8 years of agony not knowing what was wrong, but knowing something wasn’t right.”
ABOUT OUR CAMPAIGN
When a child is diagnosed with autism, developmental delay, or intellectual disability, it can be difficult to know where to turn. Parents are concerned and are looking for answers, but they are sent from one specialist to the next in a seemingly endless shuffle of doctor's office visits.
The lack of continuity of care can be especially daunting for low-income families who face additional barriers in access to informed diagnostic evaluations and medical support, sometimes waiting years for their child to receive accurate diagnoses of neurodevelopmental or genetic disorders.
Genetic testing is now recommended for all children with autism and other neurodevelopmental disorders, which has led to the diagnosis of many rare genetic conditions. Up to 25% of children with a neurodevelopmental disorder have an identified genetic cause.
Unfortunately, there are major obstacles to the clinical care of these children, including (1) knowledge gap about these conditions, (2) limited access to specialists that understand neurogenetic and neurodevelopmental disorders, and (3) financial barriers to specialty clinical care and cutting edge diagnostics.
Through the UCLA Center for Autism Research and Treatment (CART), the Care and Research in Neurogenetics (CARING) Clinic is a multidisciplinary clinic that evaluates and treats children and adults with neurodevelopmental disorders that have a suspected or determined genetic cause. This unique model provides comprehensive evaluations from a team including neurology, psychiatry, genetics, social work, and clinical psychology. These experts collaborate on personalized plans for treatment or therapies, enabling the CARING team to build stronger relationships with patients, work more effectively and, most importantly, results in improved clinical outcomes for long-term treatment.
CARING is a “one-stop-shop” where families can go to help their children with rare genetic conditions meet their full potential and improve the quality of life for the entire family.
“We had to pay out of pocket for services since we couldn’t qualify without a diagnosis.”
CARING believes that every patient should have access to the full range of care available at the clinic and should not have to forgo potentially helpful tests, therapies, or treatments because of cost.
HOW YOU CAN HELP
Though there may not be a “cure” for most neurogenetic disorders, there are a variety of therapies, medications, and resources that can help these individuals master life skills and thrive. With your support, CARING will be able to continue to provide specialized care and assistance for patients with these very complex conditions who don't have the ability to pay out of pocket or through their insurance providers. Plus, your gift will make the overall experience for family members more comfortable and less of a financial burden.
Here are some of the ways that your gift can make a difference:
- COMMUNITY SUPPORT - Through local workshops, group counseling, and virtual learning networks, our experts can share strategies that improve care for children with neurogenetic conditions. Your gift can help expand our educational, recruitment, and community support initiatives, resulting in even more patients being seen and lives being changed for the better.
- OPERATIONAL EXPENSES - The CARING clinic strives to make the time spent with patients and their families as comfortable as possible. Your donation can support the tiny details that make our clinic accessible and enjoyable for all by covering things like all-day parking costs and snacks or meals for families in our waiting room.
- TRAVEL EXPENSES - Many families travel from out of state which requires a 1-2 night hotel stay as well as parking costs. Your donation can help a family not only attend the CARING clinic, but also maximize their visit by participating in research studies.
- GENETIC TESTING
MORE ABOUT CARING
World renowned scientists, innovative clinical services, ground breaking research, active community engagement all work together to make CARING a comprehensive treatment resource.
At first consultation, the patient receives a comprehensive and multi-disciplinary evaluation from a team of neurologists, child psychiatrists and geneticists. Further specialty consultation and behavioral assessments can be provided as needed. This clinic also provides opportunities for participating in longitudinal studies that lay a foundation for future clinical trials for rare disorders. Additionally, the clinic ties eligible children into a variety of research studies and treatment opportunities through UCLA CART (Center for Autism Research and Treatment) and IDDRC (Intellectual Development and Disabilities Research Center).
If you do not wish to receive further fundraising information from UCLA Health Sciences, please either call us at (855) 364-6945 or email us at OptOutUCLAHSD@support.ucla.edu, providing your name, address, phone number and from which department you’re requesting to be removed.