Uncategorized Seattle Rare Disease Fair & Summit 2022 20 Apr 2022 We hope you can join us for the Seattle Rare Disease Fair Virtual Conference, 2022! What: The Fair and Summit aim to educate, engage, and inspire our community about the…
Uncategorized Rare Disease Day Virtual Event 2022 Recordings 11 Mar 2022 MARCH 2, 2022 Use the links below to access the recordings DAY ONE DAY TWO Life with a rare disease can have infinite milestones, setbacks, traumas and triumphs—all likely to…
Uncategorized Rare Disease Day 2022 5 Feb 2022 Collaborating to Make Mental Health in Rare Disease Stigma-Free Brought to you by: Jump to the Agenda for Each Day: Monday, February 28 | Tuesday, March 1 Register Now Syneos Health® Recognizes Rare Disease…
Uncategorized A Two-Day Golf Experience for Champions for a Cure Tournament 18 Jan 202218 Jan 2022 A Two-Day Golf Experience for Champions for a Cure Tournament Join us at the legendary Pinehurst No. 2 Golf Course to support children with rare genetic diseases. A Two-Day Golf…
Uncategorized Well-intended measure will throttle pharma innovation 11 Oct 2021 More than one million North Carolinian patients are affected by a rare disease. Tara Britt, our founder, argues that removing IP protections from medical innovation will lead to less cures…
Uncategorized Manage Self Care – Webinar Registration 10 Apr 2021 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…
Uncategorized Seattle Rare Disease Fair 16 Mar 2021 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…
Uncategorized Phacilitate Webinar 9 Feb 2021 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…
Uncategorized Rare Disease Day 2021 at Syneos Health 7 Feb 20219 Feb 2021 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…
Uncategorized Rare Across America 24 Jan 202124 Jan 2021 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…