July 2020
Like so many activities this year, advocacy has gone virtual. What a great time to learn about advocacy or take a deeper dive into advocacy! No travel costs and most events are free or have a nominal fee. Check a few upcoming events.

  • RARE on the Road Virtual Event occurred a few weeks ago, but you can view the recorded webinar. Sponsored by Global Genes and the EveryLife Foundation, this event provides community members a basic understanding of legislative advocacy and how to share your rare disease story.

  • 2020 Living Rare, Living Stronger: NORD Patient and Family Forum happening July 18-19 sponsored by NORD (National Organization for Rare Disorders). Pre-register here.

  • Rare Disease Legislative Advocates (RDLA) in cooperation with the Rare Disease Congressional Caucus will be holding a Rare Disease Virtual Briefing called Rare Disease Community Experiences with COVID-19 Response Efforts and Future Policy Opportunities on Thursday, July 23rd at 12:00 pm EST. Register here and invite your Members of Congress to attend.



  • What’s the cost of rare disease to you? The EveryLife Foundation is looking for Rare Disease families to take the National Burden of Rare Disease Survey. The study will increase awareness of the public health crisis of rare disease, inform policy proposals, and improve the lives of patients and their families for decades to come. Deadline is Sunday, July 19th, 2020.

  • The NORD Policy team wants to hear about your COVID-19 telehealth experience. Share your story here to help guide NORD’s future telehealth policy work!  

Know someone who would like to join the Cure CMD Advocacy Team? Email us and we'll add them to the list!