Chromosome 8P
Families
Join Cause
About Us
Research
Providers

Chromosome 8P

For Families

  • 8 Steps for new member
  • My hero iniative
  • Welcome to Project 8p
  • Peer Parent Program
  • Family Friendly, Community Research Updates
  • Get Involved
  • Events
  • Newsroom
  • Shop

Resources

Symptom Navigator
Printable Pamphlet/Brochure
Care Guide
Clinic Visit
Local Assistance Program

Join Cause

About Us

Research

Resources

Research Substack
Join Monthly Round Tables
8p Registry & My Hero Initiative
Apply for Funding

Providers

  • neurogenetic multidisc clinic
  • TeleEcho Model for Professionals
  • Clinic Publications
Enroll My Hero
Donate
Enroll My Hero
Donate
About Us
Chromosome 8p
Families
Join The Cause
Researchers
Providers

Career Opportunities

Commission Milestones

Commission Milestones

DEC 10 2020

Initial working groups kickoff -75 KOLS participating​

JUL 7-9 2021

Moving Mountains SHARED Family Conference in Westminster, CO
-Dup15q, 8p, and Ring14 families and professionals represented.

Start of data collection into the Clinical Research Platform (powered by RARE-X)​​

DEC 2020 - MAR 2021

10+ bi-weekly WG meetings

  • Community Engagement
  • Animal Models
  • In Vitro Models
  • Genomics/Bioinformatics

JUL 06 2021

Moving Mountains Science Conference in
Westminster, CO
– 45 researchers (22 in-person and 23 virtual)

Writing session for the Roadmap
Interact with the families ​

Mar 03 2021

Virtual  Collective Impact Conference
 – Reporting out of working groups​

JAN 2022

Illumina Partnership Finalized​

FUTURE

We continue to collect data and biosamples and are preparing to write several grants and an another
paper.​

JAN 2022

Launched the Neurogenetic Multidisciplinary Clinic at Children’s Hospital of Colorado. 

Clinical Data entered in Clinical Research Data Platform.​

AUG 2022

Published paper in AJHG​

Subscribe to Newsletter

Join The Cause

Project 8p Foundation is a registered 501(c)(3) charitable organization with EIN 83-2545342. All contributions are deemed tax-deductible

Facebook-f Instagram Linkedin Youtube
Copyright @ 2023 Project8p . All rights reserved.
Privacy Policy

Our Impact

Mission & Vision

Letter From The Founder

Alliances & Partners

Financials

Leadership Team

Career Opportunities

Meet The Heroes

8p Genetics

8p Symptoms

Chromosome 101

Rare Disease Facts

Care Tools

8 Steps For New Members

My Hero Initiative

Share What Works

Blog

Family Friendly Research Updates

Organ Tissue Donation

Events

Local Assistance Program

Take Action

News

Shop For 8p

Patient Navigator

Join The Cause

Project 8p Faster

Ways To Give

Donate Crypto

Deferred Gifts

Shop For 8p

Sponsors And Grantors

Researchers Roadmap

Join Roundtables

Commission On Novel Technologies
For 
Neurodevelopment CNVs

Publications

Research Opportunities

CNV Portal

News

Conferences

Apply For Funding

MultiDisciplinary Clinic

TeleEcho Model For Professionals

Clinic Publications

Patient Navigator

Enroll My Hero
Donate

The Project 8p Foundation (Project 8p) was created in 2018 to:

  • Accelerate future treatments, not only for 8p, but potentially for other chromosome-wide diseases as well.
  • Lead with knowledge from patients. Currently, there is no cure for 8p disorders, nor is there a standard course of treatment.

The Project 8p Foundation (Project 8p) was created in 2018 to:

  • Raise transformative funding for pioneering scientific research into treatments for a complex, rare disease involving 250+ affected genes on the short arm of the 8 th chromosome (8p). Rearrangements of these genes causes significant abnormalities to the entire neurological system, thus all organs and functions of the body– with variance in cognitive functions, gross motor skills, social development and other challenges during infancy, and throughout life;
  • Empower a unified community of 8p patients and their families so they can have meaningful lives today; and
  • Accelerate future treatments, not only for 8p, but potentially for other chromosome-wide diseases as well.