Tuesday, April 2, 2013

May 5: World PH Day is coming...and www.worldPHday.org is here!

In 2011, Juan Fuertes and Irene Delgado of Asociación Nacional de Hipertensión Pulmonar (ANHP)the Spanish PH association had a big idea.  It was also a big risk. 

Juan and Irene thought that the creation of a World PH Day would help expand awareness of the disease.  However, like all new ideas, it started with very little support.  They worked hard to engage PH associations around the world and to build interest from funders.  On May 5, 2012, they hosted a PH Symposium in Madrid that included about a dozen PH association leaders from Europe, Asia, Latin America, Africa and North America.

Most importantly, they started something that should, could and would grow.

This year, what Irene and Juan began is much easier…everyone is jumping in to help.  Here at PHA,
we have accepted the responsibility of establishing the World PH Day website.  Since it went live two weeks ago, World PH Day events and participation from 43 national and international PH associations has been posted…with more coming.  PHA Europe has been working on making a sports event model they have created available to other associations throughout Europe and beyond.  Other groups are planning their own unique activities.

Interest in the website is astonishing.  Custom translations have already been completed for Chinese and Portuguese…and Spanish may well be available by the time you read this.  In addition, Google Translator provides access to the site in 65 languages.

An exciting feature of the website that we hope will grow – and that YOU can participate in – is the Worldwide Photo Mosaic.  Patients, families and friends from around the world are beginning to upload pictures with their own World PH Day message.  There’s even a World PH Day logo that can be printed out and included with the message.  One of my favorites was posted by one of PHA’s founders, Pat Paton. She wrote:

              “I saw 29 doctors about my PH symptoms before I was correctly diagnosed.  That was 26 years ago!”

Another World PH activity that PHA has just launched on our own website is Flames of Hope .  Flames of Hope allows our community to honor or remember a patient, caregiver medical professional or other person who has made a difference in their lives while providing support for current programs.

We hope you will join with us as we establish World PH Day as an important way to expand knowledge and awareness of PH throughout the world.  Awareness is a critical first step in improving the lives of all those who live with PH.



No comments:

Post a Comment