by PURA Syndrome Foundation | Jun 10, 2024 | Awareness, Resources
We’re excited to share that we’ve joined the Rare Epilepsy Network, a consortium of rare disorders working together on epilepsy research, advocacy and drug development.We hope this partnership will help connect our community with the latest research in...
by Eva Kittay | Feb 29, 2024 | Awareness
Today we are raising awareness of rare conditions such as the one my daughter Sesha has. It is PURA Syndrome, and it is a one-gene variant that has profound effects. When we recognized that something was not right with our beautiful 4-month-old baby and learned that...
by PURA Syndrome Foundation | Feb 29, 2024 | Awareness, News
Today is World Rare Disease Day! Today is dedicated to raising awareness among the general public and key decision-makers about rare diseases and disorders and their impact on patient’s lives. World Rare Disease Day gives a public and social platform for rare...
by PURA Syndrome Foundation | Feb 8, 2024 | Awareness, News
In a few weeks, the PURA Syndrome Foundation will join together with other rare disease organizations across the globe in celebrating World Rare Disease Day. When an individual is impacted by a rare disease, awareness is critical in increasing support, raising funds,...
