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Those who wish to gain practical tools for living optimally with rare diseases are encouraged to attend the annual Living Rare Living Stronger Patient and Family Forum, hosted by the National Organization for Rare Disorders (NORD) and set this year for June 26-27. The conference brings together patients, families, healthcare professionals, and other supporters for learning, sharing, and connecting. Due to the ongoing COVID-19 pandemic, the general sessions, breakout workshops, and networking will again be virtual. The sessions, which will offer perspectives from patients,
http://www.alltrials.net/2014/guest-post-people-with-rare-diseases-need-results-from-all-trial/ Guest Post: People with rare diseases need results from all trials 7th April 2014 By Rob Pleticha is the Online Community Manager of RareConnect.org, a EURORDIS project This is a personal opinion The International Rare Diseases Research Consortium plan to have 200 new rare diseases therapies by year 2020. In Europe a disease or disorder is defined as rare when it affects fewer than 1 in 2000 citizens.(1) Researchers studying rare diseases have difficulty gathering a sufficient number of peo