80 people – most of them suffering from a rare and potentially fatal disease – will meet mid-May in northern Spain in order to walk part of the legendary Camino de Santiago together.
The patients all suffer from Hereditary Angioedema (HAE) and it is far from an everyday occurrence to walk the kind of mileage they enter into on the Camino. However, on 14 May 2016 they will join forces and take part in the “HAE Camino Walk” together with caregivers, doctors, and industry representatives from Canada, USA, Mexico, Venezuela, Brazil, Argentina, Sweden, Denmark, Hungary, Italy, Spain, Australia, New Zealand, and Japan.
– There is a dual purpose of the “HAE Camino Walk”. Firstly, for each and every patient to prove that the disease does not limit the ability to live life to the fullest. And secondly to raise the global awareness of the disease through every step they take on the Camino, says Executive Director Henrik Balle Boysen of HAEi.
The “HAE Camino Walk” takes place on and around 16 May, which is the global awareness day for HAE. Also, the walk is quite appropriately leading up to the HAE Global Conference in Madrid, Spain 19-22 May 2016. The theme for the conference, that is expected to gather around 600 delegates from all over the world, is “Creative Advocacy for Expanding Access to Therapy”.
– The aim is continuously to find ways to improve time to diagnosis, secure life saving therapies, and get funding for these – allowing HAE patients around the world to lead a safer life and fulfill their life’s potential, says Henrik Balle Boysen. And he continues:
– We are very happy that Her Majesty the Queen of Spain has accepted the Presidency of Honor for our global conference. In the area of health, Queen Letizia has devoted herself to encouraging and giving visibility to those suffering from infrequent conditions, known as ‘rare diseases’, and their families, says Henrik Balle Boysen.
The first biannual global conference on HAE took place in Copenhagen, Denmark in 2012 and was followed by the 2014 conference in Washington D.C., USA.
HAEi is an international non-profit umbrella organization presently organizing national HAE organizations in 52 countries on all continents.