Our impact old

Our Impact

four Main Pillars

Deliver a High Quality of Standard Care
Accelerate Research for 8p Related Disorders
Partner with Global Difference Makers
Empower Community

Created the first-ever global patient registry with authentic patient information critical to clinical trials. Presently 550 children have been diagnosed, but it is estimated to be 500,000+ based on incidence rates.* ( *footnote)
Galvanized and inspired a global network of renowned researchers, enlightened doctors and credible medical centers;
Designed systems to promoted open science, accelerate knowledge transfer; and incentive collaboration—all core to the organization’s value system;
Facilitated international conferences and interactive communication platforms. This has allowed families to share and understand symptoms while measuring changes in their children with scientific researchers and medical clinicians. At the same time, Project 8p has provided them with invaluable coping information;
Funded top research investigators focused on the most promising outcomes and breakthrough treatments; and
Launched modeling of standards for treating 8p (largely unknown about by physicians and healthcare providers) by way of funding a Neurogenetic Multidisciplinary Clinic at Children’s Hospital of Colorado to serve as the model center of excellence.
Gained attention of industry partners to follow the 8p agenda while making the case that new gene and other-related treatments have universal implications beyond immediate return-on-investments and short-term gains.

Why Chromosome Disorders are important?

Approximately 35% of birth defects are caused by chromosomal imbalance and copy number variation.

That’s 1.3 million newborns affected each year.

This figure is from a textbook chapter for Developmental Genetics in the Thompson and Thompson Genetics and Medicine 9th edition.

Chromosome 8p Day

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