Children with rare genes have dreams too.
The global impact of rare diseases is huge, but silent.
Our mission is to be the voice for those affected by rare disorders and fund the research to find viable treatment options, beginning with Weidemann-Steiner Syndrome (WSS).
400 million people are diagnosed with a rare disease globally.
Of the 7,000 identified rare diseases, only 400 have licensed treatments.
In the United States, a disease is defined as Rare when it affects less than 200,000 at any given time.
A rare genetic disorder is much like a kaleidoscope.
One piece changes the entire picture.
We’re making moves.
towards…
Awareness
Awareness of the significant impact a rare disease has on one’s life and the lack of support
Tangible Treatment
Converting valuable research into tangible treatment in our lifetime
Earlier Detection
Earlier detection of genetic disorders through valuable information and connections
Integrative Approach
An integrative approach for care between patients, healthcare providers, and educators
Support
Support for WSS, rare diseases, and other complex genetic disorders
Financial Resources
Financial resources for patients in need, not solely based on financial circumstance
Parker Ignited our Purpose
Our story begins long before our son’s diagnosis with an extremely rare medical condition called Weidemann-Steiner Syndrome or WSS, affecting about 1,000 people worldwide.