Reminder - we need your input! We’re planning to develop a Scleroderma & Raynaud’s patient registry and we need your views on sharing data and using digital platforms etc to help us make this a success. The SRUK Patient Registry will be a secure database which holds anonymised health data on patients living with Scleroderma and Raynaud’s. It would be a powerful resource to gather data and real-world evidence to allow SRUK and others to better advocate for improved care and access to treatments t

The Global PNH Patient Registry is a powerful opportunity for individuals with paroxysmal nocturnal hemoglobinuria (PNH) and their family members to contribute directly to PNH research. This registry is patient-led and patient-powered, and you can contribute your story today! Find out more: pnh.iamrare.org | National Organization for Rare Disorders, Inc. (NORD)

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