ASOCIACION ONDINE
Málaga, Spanien
Teaming-Manager von 1 Gruppen
Teaming-Manager in folgenden Gruppen
86 € Gespendet
43 Teamer
Teaming-Manager seit: 25/01/2025
Nearly about 40 people in Spain and 2,000 people in the world who suffer from Central Congenital Hippoventilation Syndrome, known as Ondine Syndrome, a rare disease causing to "forget" from breathing when sleeping or 24 hours a day, so they need a ventilator to maintain their life. Only since 2003 is diagnosed the mutation in the PHOX2B gen that regulates autonomic activities, SNA causing the Syndrome. The investigation is VITAL for a correct diagnosis (still unknown disease) and on time.