News

GLOBAL GENES – ACE’S ADVENTURE WITH A RARE DELETION ON CHROMOSOME 8

Just by his smile, everybody knows our beautiful two year old son Aaron, or as we call him, our Ace. He’s…

Three moms move mountains to help kids with rare disorders

Their patient-led consortium is creating a free and open database for

THE JOURNEY BEYOND A DIAGNOSIS

My baby’s new prognosis: ‘She will not die’… but what will her life be like and how should I live…

COLUMBIA LACROSSE SIGNS 8P HERO KARINA SHAH THROUGH TEAM IMPACT

Team IMPACT is a national non-profit organization, has developed a unique multi-year program that matches children facing serious illnesses and…

8P HERO BELIEVED TO BE THE ONLY CHILD IN THE WORLD WITH A COMBINATION OF RARE DISEASES.

Hannah Pender is believed to be the only child in the world with a combination of rare diseases. She was…

PATIENT-LED COMMUNITIES ACCELERATING RARE DISEASE RESEARCH

Source Article The Rare As One Project, supports 30 patient-led rare disease organizations that are working to develop and strengthen a collaborative research network in…

CHAN ZUCKERBERG INITIATIVE TO FUND 30 PATIENT GROUPS, AIMING TO BUILD A MODEL FOR TACKLING RARE DISEASES

Click here to view the whole article on Stat News Click here to view the whole article on Pharmacist.com Excerpt:…

NEW ZEALAND HERALD – KATHRYN HAZELDINE: THE LIFE OF A 5-YEAR-OLD WITH CHROMOSOME 8P CONDITION UNABLE TO YET WALK OR TALK

Five-year-old twins Kathryn and Alexander Hazeldine have a special bond. Photo / Ben Fraser Article by: Leah Tebbutt –…
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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.