Register now for the NeuroRare Open Science Challenge
Register now for the NeuroRare Open Science Challenge
Register now for the NeuroRare Open Science Challenge
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Register now for the NeuroRare Open Science Challenge
Register now for the NeuroRare Open Science Challenge
Register now for the NeuroRare Open Science Challenge
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Past Events

SWW: Lisa Brideson-Glynn – Speech and Language Pathologist

Wednesday, September 21st, 2022 Lisa Brideson-Glynn is a Speech and Language Pathologist with over..

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SWW: Lisa Brideson-Glynn – Speech and Language Pathologist

Wednesday, September 21st, 2022 Lisa Brideson-Glynn is a Speech and Language Pathologist with over..

Read More

SWW: Lisa Brideson-Glynn – Speech and Language Pathologist

Wednesday, September 21st, 2022 Lisa Brideson-Glynn is a Speech and Language Pathologist with over..

Read More

SWW: Lisa Brideson-Glynn – Speech and Language Pathologist

Wednesday, September 21st, 2022 Lisa Brideson-Glynn is a Speech and Language Pathologist with over..

Read More

Family Connections

As rare families, we understand the value of relationships. The Family Connections program facilitates peer support. Managed by the Patient Leadership Board, we match families with an 8p community member.

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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.