January 2020

Rare Disease Week 2020 If you are planning to attend Rare Disease Week on February, check out the Next Steps as you prepare to travel to D.C. You will also find this information in your inbox in a separate email if you have let us know that you plan to attend. Contact Lani Knutson with questions.

Rare Disease Day February 29, 2020 Show your stripes! Learn how you can spread awareness of Rare Diseases by participating in Rare Disease Day. Check out NORD's website to learn more.

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Register to attend the Monthly RDLA Legislative Webinar on January 16 at Noon EST. These webinars are a great way to learn about current legislation that affects Rare Diseases. Read Global Gene's guide to Building Relationships with your Representatives. Share your journey! NORD is asking those affected by Rare Disease to complete a 10 minute survey on barriers to diagnosis, care, and treatments. Your data is valuable and can help them further the cause! Register to attend NORD's 2020 Living Rare, Living Stronger: NORD Patient and Family Forum in Cleveland, Ohio on May 14-16. Check out what's going on in your state. Join the Rare Action Network (RAN).

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