In August 2012 QED Clinical Services, a global CRO, established OrphanReach, an Alliance of specialist providers, to address the increasing demand for, and particular challenges of, drug development for rare diseases. OrphanReach has been created to bring together the best possible partners in a strategic alliance supporting the fight for making new rare disease treatments available to patients faster. OrphanReach provides access to patients in more than 50 countries across 5 continents to enable Pharmaceutical and Biotechnology companies to do what is really important: REACH rare disease patients, no matter where in the world.
Through organisations like NORD and EURORDIS OrphanReach is connected to most of the patient advocacy groups. We believe it is essential to link with advocacy groups, as they help to educate and support patients with their disease, leading to improvements in treatment adherence and retention of patients in clinical studies.
To show our support and dedication QED has chosen a particular patient advocacy group, the Niemann-Pick Disease Group (UK), as our nominated charity for 2013. Niemann-Pick disease is a lysosomal storage disorder which means it causes an accumulation of toxic materials (cholesterol and other fatty acids) in the body’s cells. For further information please visithttp://www.niemannpick.org.uk.
We will be fundraising and donating throughout the year through various activities, the first of which will take place on Rare Disease Day 2013 on the 28 February. This page has been set up to welcome anyone who would like to join us and donate to Niemann-Pick Disease Group (UK).