For the first time, Project 8p has led the launch to change the model of how clinical care can be organized with data to inform research and potential therapies, while serving bedside for a standard of care that does not exist. In collaboration with other rare disease groups, the purpose of our the clinic is to serve patients and families affected by Chromosome 8p and related neurogenetic conditions. Our program’s goal is to provide world-class expertise and multi-disciplinary care to patients, through personalized care plans and access to cutting edge research to advance the care of these rare conditions.
Neurology
Neuropsychology
Special Care Clinic
Rehabilitation Medicine
Physical Therapy
Occupational Therapy
Speech Therapy
Palliative Care
Social Work
Nutrition
Nursing
Family Navigator
Geneticist
Genetic Counselor
Developmental Pediatrician
Families begin each day in the Neurology Clinic with a cognitive assessment by a neuropsychologist. Next, they are seen by nursing staff in the Specialty Care Clinic—a pediatrician who specializes in complex and chronic conditions and a registered dietitian who focuses on pediatrics. Finally, they are evaluated in our Multidisciplinary Clinic by a neurologist, geneticist, doctor of rehabilitation medicine, and physical, occupational, and speech therapists. The nurse coordinator plans the clinic day in advance and communicates with families to ensure the day’s schedule is clear and doable for their child.Â
Families can prepare for a long day in the hospital by bringing snacks and/or meals, feeding supplies, communication equipment, orthotics, and everything else your child needs to get through the day comfortably. Our goal is to help your child develop a care plan at the end of the day to simplify and optimize their medical and therapeutic care. We recognize that it will be a long day, but we want to assemble a team of experts for your child’s rare disease and efficiently provide you with the best recommendations to improve your child’s quality of life. We anticipate most patients to be seen once a year in the multidisciplinary clinic.
To schedule an appointment at Children’s Hospital Colorado (CHCO), please gather the following information:
Once you have this information, please email engagement@project8p.org to begin the scheduling process.
Clinic Contact Information
Clinic Nurse Coordinator: Ryleigh VandenBroeke, RN
Phone: 720-777-7453
Fax: Attn: 8p Clinic, 720-478-7103
Email: BNDP@childrenscolorado.org
During your visit to the hospital, efforts are made to ensure a seamless experience for your family by integrating the research study activities with coordinated, high-quality medical care. This approach is designed to reduce additional burden on families. Participation in research at the Children’s Hospital Colorado Clinic is sponsored by Project 8p at no cost to participants. However, the clinical care portion of the visit is billed directly to your insurance or Medicaid by Children’s Hospital Colorado.
While approval from your insurance or Medicaid cannot be guaranteed, CHCO is experienced in navigating these processes. Their team is available to support you through insurance or Medicaid reviews and can provide a letter of support to share with your insurance provider.
To ensure a smooth process:
At Project 8p, we are committed to ensuring that every patient receives the best possible care. Our experienced providers are available to consult with your local healthcare team to discuss your unique case and share our insights into the management and treatment of chromosome 8p disorders.
If your provider would like to connect with our experts, please reach out to Patient Engagement Manager, Kaiti Syverson at Kaiti@project8p.org to facilitate this connection. Together, we can collaborate to provide the best care for you or your loved one.
Clinic RN Coordinator
Administrative Service Coordinator
Special Care Clinic
Special Care Clinic
Rehabilitation Medicine
Palliative Care
Occupational Therapy
Genetic Counselor
Social Work
Family Navigator
Developmental Pediatrics
Neuropsychology
Physical Therapy
Speech Therapy
Occupational Therapy
Speech Therapy
Speech Therapy
Clinical Research Project Coordinator
The My Hero Initiative Complementary Studies advance our understanding of Chromosome 8p Disorders. Working with the first three steps of the My Hero initiative this component is designed to enhance our primary studies, providing a comprehensive understanding of each subject matter.Â
Project 8p Foundation is a registered 501(c)(3) charitable organization with EIN 83-2545342. All contributions are deemed tax-deductible
