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…

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…

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…

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…

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…

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…

We have all been inundated by webinars, podcasts and Zoom calls focused on identifying and navigating COVID-19 challenges. Based on what we have learned from the first five months of…

Celebrating women in advanced therapies... It’s important for our industry to inspire and attract female talent and to value the contribution of women in science if we’re going to achieve…