Patient organisation round up: August 2019

Pulmoner Hipertansiyon ve Skleroderma Hasta Derneği (PAHSSC) meets with rare diseases parliamentary investigation commission

PAHSSC is one of the founding organisations of the Rare Diseases Network of Turkey, which was invited to the rare diseases parliamentary investigation commission. PAHSSC presented on the range of problems experienced by people with rare diseases and potential solutions.

Scleroderma Awareness activities have also been carried out in Bodrum, Ankara. A patient meeting was held in İstanbul, and the second idiopathic pulmonary fibrosis (IPF) patients and families’ educational course was held in Izmir at the Ege University’s Interstitial Lung Diseases Division with Prof. Dr. Nesrin Mogulkoc.

Avrupa Akciğer Vakfı (ELF)'nın aylık haber bülteninde, derneğimiz TBMM Komisyonundaki çalışmalarımız, Haziran Ayı Skleroderma Farkındalık Ayı etkinliklerimiz ve Prof. Dr. Nesrin Moğulkoç hocamızın önderliğinde Türkiye'nin ilk IPF Hasta ve Yakını Bilgilendirme Toplantısı'yla, üçüncü kez haber oldu. 

Teşekkürler ELF

https://www.europeanlung.org/en/news-and-events/news/patient-organisation-round-up-august-2019