(ESP only) Las Enfermedades Raras (ER) son en su mayoría enfermedades graves, crónicas y progresivas que producen una alta carga familiar y social y plantean retos a los sistemas de salud y protección social muy distintos a los de las enfermedades comunes.
There are two months to go until the 7th Global Patients Congress ! We know that our members are working hard and are incredibly busy but please don’t forget to register now if you intend to join us. We are pulling together final preparations and do not want you to miss out.
World Cancer Day unites the world’s population in the fight against cancer. It aims to save millions of preventable deaths each year by raising awareness and educating about the disease, pressing governments and individuals across the world to take action.
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.