On 29 February 2016, people living with or affected by a rare disease, patient organizations, politicians, carers, medical professionals, researchers and industry will come together to celebrate the ninth annual Rare Disease Day.
Technological advances in scientific research have placed us in a universe of knowledge that today allows us to speak of more than 8,000 rare diseases (EPOF) that affect 8% of the world population, as determined by WHO. However, governments are not following at the same pace, causing a gap between knowledge of treatment and access to treatment.
By Brian Kennedy, Executive Director of the Global Alliance for Patient A ccess. In December I had the pleasure of participating in the Latin American Patient Summit on Biotherapeutics, where I offered the assembled advocates some unexpected advice: tell stories.
In August 2015, in Panama City, we held our fifth IAPO Latin American regional meeting, moderated the third Latin American Summit of Patients’ Organizations sponsored by Novartis and participated in the 7th Latinapso meeting.