Asociatia Prader Willi din Romania

The Asociatia Prader Willi din Romania is a patient advocacy organization focused on supporting individuals with Prader-Willi syndrome and other rare genetic diseases. It provides patient support, advocacy, educational resources, and promotes research collaborations. The organization operates in Romania and collaborates with international partners. It engages in policy advocacy, offers support services such as helplines and informational materials, and maintains a presence on social media. The organization was established to improve the quality of life for patients and their families, raise awareness, and influence healthcare policies related to rare diseases. Official organization dedicated to supporting individuals with Prader-Willi syndrome and other rare genetic diseases in Romania. The organization aims to increase awareness, facilitate access to information, create a national database on rare diseases, build support networks among patients and professionals, promote research, and collaborate internationally. It provides support and counseling to patients and families, organizes events, conferences, and educational activities, and maintains a resource center for rare diseases. The organization also engages in advocacy, policy work, and public awareness campaigns. It operates the NoRo Rare Disease Center, which serves over 9,000 patients, and is involved in various projects and initiatives to improve diagnosis, treatment, and quality of life for individuals with rare conditions.