The Rare Disease Innovations Institute is proud to bring you “The Common Voice of Rare Disease”, our blog which will share stories of vision, impact and success around rare disease, nationally and abroad. See below for our latest posts or ‘continue reading’.
Topic Self – Care for Rare Disease parents #Rare #bonnellfoundation Description Let’s gather and unwind together. The pandemic has increased the stress families in the Rare Disease community are experiencing.Please join The Bonnell Foundation: Living with cystic fibrosis as we present: Manage stress and Promote self-care.We all need some tips on how to do this!We’reContinue reading “Manage Self Care – Webinar Registration”
SAVE THE DATE – Friday, June 4th and Saturday, June 5th, 2021 Join Born a Hero Research Foundation and Seattle Children’s Research Institute for this year’s virtual Seattle Rare Disease Fair on June 4, and the Rare Disease Summit on June 5. The Fair and Summit aim to educate, engage, and inspire our community aboutContinue reading “Seattle Rare Disease Fair”
THE EVOLUTION OF PATIENT VOICE AND ENGAGEMENT THROUGHOUT THE JOURNEY TO COMMERCIALISATION Date: 11th February 2021 Time: 4.00pm GMT | 11.00am EST | 8.00am PST HOW INDUSTRY, BIOTECHS AND PATIENTS CAN WORK TOGETHER TO STREAMLINE THE ROAD TO COMMERCIALISATION In the rush to the clinic and in the hustle of running collections, manufacturing and logistics operations, theContinue reading “Phacilitate Webinar”
Innovation in Rare Disease: Making Progress with Cell & Gene Therapies This Rare Disease Day, Syneos Health continues the drive to raise awareness of rare diseases and their impact on patients’ lives – and to shine a light on the opportunities for cell and gene therapies in treating these disorders. Join us for an inspiringContinue reading “Rare Disease Day 2021 at Syneos Health”
WHENFebruary 22 – March 5, 2021 (Virtual Congressional meetings on March 3rd and 4th) WHATVirtual meetings with your Senators and Representative AND virtual advocacy events. Rare Disease Legislative Advocates (RDLA) organizes meetings for rare disease advocates with their Members of Congress and/or the Member’s staff. Meetings will take place virtually on March 3rd and 4th. The RDLAContinue reading “Rare Across America”
Thank you to the rare disease community for nominating these amazing advocates who give rare disease patients a voice on Capitol Hill and in state government. A special thanks to the members of the RareVoice Nominations Committee who performed the difficult task of selecting finalists in each category. The awardee for each category will be announced live at the RareVoice Awards takingContinue reading “Founder & President, Tara J. Britt, Finalist in Rare Voice Awards”