The Koolen-de Vries Syndrome Foundation is now a member of the National Organization for Rare Disorders or NORD! NORD is a patient advocacy organization dedicated to individuals with rare diseases […]
Meet this week’s Kool Warrior, Kira! Kira is 9 years old and loves her family, her friends and everyone at school. She’s a social butterfly! Kira is a huge Teen […]
The Koolen-de Vries Syndrome Foundation is excited to announce that we are one of the 147 organizations which have partnered with the Castleman Disease Collaborative Network and the Chan Zuckerberg […]
Meet this week’s Kool Warrior, Cesc! Cesc is 2 years old and lives in Barcelona. His brother is his best partner in crime and his greatest accomplice! He just started […]
Meet this week’s Kool Warrior, Ellie! Ellie is 3 years old and lives in Switzerland with her family. She loves music and is obsessed with the solar system, rockets, Jupiter […]
Meet this week’s Warrior, Ryder! Ryder is 1 1/2 years old and lives in Oklahoma! He just learned to walk on his own (woohoo!) and loves to eat everything. He […]
Meet this week’s Kool Warrior, Laura! Laura is 26 years old and lives in the UK with her mum, dad, and younger sister. She is a proud auntie! Laura lives […]
Meet this week’s Kool Warrior, Ilan! Ilan is 7 years old and is from Wales! He loves going to school and spending time with friends. He’s a big fan of […]
Meet this week’s Kool Warrior, 11-year-old Sergio! Sergio lives in Madrid, Spain, but is originally from Colombia. He loves all things music, especially dancing! Sergio was told he wouldn’t walk, […]
