Rare Disease Day 2015: Day-by-day, hand-in-hand
IAPO is very proud of all its members who supported Rare Disease Day in 2015.
Rare Disease Day took place on 28 February 2015. Patients and patients’ organizations united around the world to raise awareness about rare diseases and their impact on people's lives with the general public and decision-makers. The theme for 2015 was ‘Living with a rare condition. Day-by-day, hand-in-hand’.
Established by IAPO member EURODIS in 2008 as a European campaign, it is fantastic to see how well the campaign has grown, with events now taking place around the world reaching thousands of people.
Involvement of IAPO members
A number of IAPO members work in the area of rare diseases and call for the same message as IAPO’s own Patient Solidarity Day: every person, every patient is equal and all have the right to access the healthcare they need, when they need it. We need to unite to ensure that all people, across the world, have fair and impartial access to quality healthcare.
IAPO member, the New Zealand Organization for Rare Disorders (NZORD), supported the day and highlighted rare disease concerns:
'February 28th is Rare Disease Day and an opportunity for those who often slip below the radar in our health system, to have some focus on their needs and interests. Getting a timely and accurate diagnosis can be one of the major hurdles they face, and is often a significant frustration.
That’s not to say it is all bad for those with rare diseases. There is a small army of dedicated health professionals out there working on a daily basis to improve the health and quality of life of rare disease patients, as for all health patients. Their commitment makes a very significant difference for many of us...
For rare disease patients [sustained progress] will mean getting a fairer share of the health budget, less time on waiting lists, and less time untreated. This would be a big step forward in gaining equitable access to healthcare, just as those needing cancer treatment and hip and knee surgery, rightly expect from our health system.'
Read the full NZORD press release.
Official video for Rare Disease Day
For more information on the Day, and to show your support, please visit the official website.