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PAHSSC FAALİYETLERİYLE EKİM AYINDA AVRUPA AKCİĞER VAKFI - ELF, 'YE HABER OLDU - 2021.10.06

PAHSSc Avrupa'ya sesini duyuran Türkiye'nin #TEK akciğer hastaları dayanışma derneği faaliyetleriyle Avrupa Akciğer Vakfı, European Lung Foundation (ELF)'nın aylık bülteninde haber oldu.

 

Bu süreçte emekleri, katkıları ve özverileriyle yanımızda olan herkese gönülden teşekkür ediyor, hastalarımız kadar hasta yakınlarımızı da derneğimize üye olmaya davet ediyoruz.

 

Sizinle daha güçlüyüz.

https://europeanlung.org/en/news-and-blog/patient-organisation-round-up-october-2021/

New magazine launched for PAH and scleroderma patients in Turkey

Nefes (Breath), a new on-line magazine, has been launched by the Pulmonary Hypertension and Scleroderma Patient Association (PAHSSc) in Turkey. It targets patients, caregivers and doctors. Nefes is full of interviews with PAH and scleroderma patients, doctors that specialise in these diseases, the spokesperson for the Rare Diseases Network and includes valuable international input from Hans Dieter Kulla (German PHeV) and Tess Guzman. Read the first issue here: https://www.pahssc.org.tr/e-dergi

 

The Association were also busy with other activities this month:

 

  • Two patients who had received lung transplants shared their experiences online via the Association’s Instagram account
  • During IPF awareness week (13-19 September) the Association raised awareness on social media channels and took part in an event to light up the bridges on the Bosporus, which connects Asia with Europe. The bridges were illuminated with symbolic colours of pulmonary hypertension. To conclude the week, a mobile oxygen concentrator was presented to one of their members.

 

Read more of PAHSSc’s news.

 

#NadirHastalık #PulmonaryHypertension #PulmonerHipertansiyon #idiyopatikpulmonerfibrozis #IdiopathicPulmonaryFibrosis #Skleroderma #Scleroderma #SistemikSkleroz #SystemicSclerosis #EisenmengerSendromu #Eisenmenger #RareDisease #Raynauds #KTEPH #AkciğerNakli #OrganBağışı #OrganBağışındaBelçikaModeli #OrganNakli #VarsayılmışOnamSistemi #VarsayılmışRızaSistemi #PulmonaryArterialHypertension #PulmonerArteriyelHipertansiyon #sizinledahagüçlüyüz #PAHSSc @eurordis @nadirhastaliklaragi @saglikbakanligi @tcailesosyal @csgbakanligi tcicisleri @izmirvaliligi35 @izmirilsaglik @izmirbuyuksehirbelediyesi @izmirkentkonsey @tagucbirligi @european_lung

 

 

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