“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!
Gerry from Austria talks about his daughter
In 1998, after three years of travelling from one doctor to the next, we finally got the diagnosis ‘primary pulmonary hypertension‘ for our then three-year-old
The Story of Beatriz and her mother Maria
Beatriz is 46 years old and, according her mother, “she was born without health”. Her mother is her caregiver. She used to take care of
Jelena from Serbia talks about PH
I think of PH all the time. I think about some banal things that other people don’t think about. For example, how far can I
Andjela from Serbia talks about PH
When I was diagnosed with PH, I often thought about the disease. I kept searching the Internet, I listened to various stories about it, asked
The Story of Gilad Lauterbach and Pulmonary Hypertension
My name is Tami and I am married to Gilad. During the month of February 2016, Gilad was not feeling well and complaining of shortness
Paula, a PH patient from Portugal, shares her experience
Nobody knows what might happen from one day to another. But I feel like I had a gun to my head. The gun’s name was