Rare diseases
About one million Dutch people - more than 6 percent of our population - suffer from a rare condition. The Rare Diseases Fund has been fighting this frightening fact since 2005. Unfortunately, children in particular are affected by a rare condition. Approximately 14,000 of them die every year. Furthermore, the families these children belong to are often alone, while millions are available from the government and various funds for 'known' diseases. The Rare Diseases Fund finds this unacceptable. That's why we raise money for scientific research and raise awareness about rare diseases. We also organize peer contact days, where we do everything we can to put a smile on the faces of sick children!
Within Europe, a condition is classified as rare if fewer than 1 in 2,000 people are affected. In practice, this concerns very rare conditions, such as the Marshall-Smith Syndrome, which only affects a few children in the Netherlands. These children have problems with growth, nutrition and breathing and have mental and physical development delays. Some rare conditions belong to a 'known' condition such as cancer, but in a rare form. For example, Ewing's sarcoma is a rare cancer that causes bone tumors in children and young adults.