Many members of the Alliance for Pulmonary Hypertension and other members of the pulmonary hypertension community contribute to the PH-KSP by sending resources, articles, videos, patient stories and other relevant materials.

The day-to-day running of the Pulmonary Hypertension Knowledge Sharing Platform (PH-KSP) is carried out by Pisana Ferrari, Alena Adarbehova and Carolin Thurmann (see below).

Pisana FerrariWeb Administrator, content creation/curation

  • Background in Political Science and International law
  • 30+ years experience in communications and event management
  • Diagnosed with pulmonary arterial hypertension in 1988, 21 years post double lung transplant
  • Involved in patient advocacy since 2003
  • President of AIPI, Italian pulmonary hypertension patient association
  • Secretary General of the Alliance for Pulmonary Hypertension
  • Full CV at this link

Alena AdarbehovaContent creation/curation

  • Experienced Pharmacist in a hospital pharmacy with direct interaction with patients until her diagnosis of idiopathic pulmonary hypertension
  • Diagnosed with pulmonary arterial hypertension in 2006
  • Has undergone 2 double lung transplants, in 2014 and 2017
  • Volunteer for the Alliance for Pulmonary Hypertension
  • Full CV at this link

Carolin Thurmann – Support to Web Administrator

  • Optometrist and trainer of the optician Trainees until the diagnosis in 2015
  • Idiopathic pulmonary hypertension
  • Head of Social Media for the German Pulmonary Hypertension association (ph e.v.) since 2017
  • Board Member of ph e.v. since 2021
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