Rare but not uncommon « A more integrated system of gathering genomic data offers a solution with potential channels for return on investment » is the focus of the recent World Economic Forum project on Rare Diseases. Only 5% of the 475 million people with rare disease have a treatment. Given that 80% of these diseases have…
ICPerMed and ERA PerMed published the joint statement « Towards the Implementation of Personalised Medicine in Europe – The Advantage of a European Partnership« . The statement stresses the need for establishing a European Partnership for Personalised Medicine. Already a lot has been achieved by a large number of international, pan-European, national as well as regional activities…
Indian Organisation for Rare Diseases (IORD)’s World Rare Disease Day-2020 That’s the takeaway from IORD conference on ‘Raising the Awareness: Prevention of Rare Diseases’ in Hyderabad, India that summed up the World Rare Disease Day-2020 event. Doctors, survivors, expert speakers, healthcare staff, patients’ organisations, RD patients, researchers, policymakers, RD volunteers, parents and students took part…