Research
With Knowledge and sharing knowledge being one of our core values, we want to share with you, all the research we've found on some of the rare conditions we support
USAIH
Learn about some of the most recent medical trials on IH aka Intracranial Hypertension or Pseudotumor Cerebri from our Board member and Doctor Jacqueline Shaia
Shunts
Learn about the newest advances in medical devices. A device specifically for the monitoring of intracranial pressure. Said to be available in The US in 2026.This device is life-changing for shunt patients. ICP Bolt Monitoring & Lumbar Punctures can be a thing of the past.
NORD
National Organization for Rare Disorders is currently ruuning a research study on the quality of Life for individuals living with rare disorders. Help us advance research by sharing your experience. Take the survey at the link below