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 Ferrari – Web 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 Adarbehova – Content 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