“Time matters” is a PHA Europe web campaign designed to raise awareness about the importance of TIME in PH: time to diagnosis, time to treatment, etc… It collects photos and posts from patients and family members in Europe and around the world. The website, which was originally set up in English, is available in 14 other languages. The campaign will be relaunched with new features in 2015.
The fact that time matters to PH patients has been a long-running theme within our organization.
Time Matters 2012
The initial Time Matters project was launched in 2012 in order to raise awareness of the importance of the time element in the diagnosis and treament of patients with PH. Patients, caregivers and HCPs were invited to share their hopes for the future and give their advice to other people whose lives were affected by PH.
Over the past years over 150 people from 30 countries shared their hopes and dreams with the community, making a great contribution to awareness of the condition. Read their stories.
Redesign and relaunch of Time matters
Over the past few years there have been significant developments in the treatment of PH: new drugs, new treatment strategies, including combination therapy, and improved surgery techniques, eg. lung transplant (LTX) and pulmonary endarterectomy (PEA). You can find more info about LTX and PEA in the relevant parts of this website.
Despite these progresses, the level of awareness of PH is still far from optimal, even among members of the medical profession, and it can still take up to 3 years for a correct diagnosis and initiation of treatment.
Now, PHA Europe is relaunching the #TimeMatters campaign among the PH community in order to encourage discussions and debate across the PH community in Europe, in particular through social media, on the different aspects of time, in order to address this gap and hopefully raise the profile of the disease further!