Cure CMD Advocacy Team Update

April 2020

Dear Cure CMD Advocacy Team,

How are you doing? I'm exhausted. Between keeping everyone healthy to working full time from home to home schooling our boys to keeping spirits up to . . . the list goes on. I have to admit advocacy is one of the last items on my list these days. However, the need for our voices to be heard has not stopped and, in some cases, the need is heightened.

So if you can find a few spare minutes this week, I encourage you to:

Write an email to your Federal and State Legislators and tell them your story. Tell them how COVID-19 has affected your family specifically and what they can do to support families like yours.

Email me and tell me what you want Cure CMD's Advocacy Team to focus on now and in the future. Employment issues? Accessibility? Funding for research? I want to know what's important to you!

Ask your Members of Congress to support expanded paid family and medical leave during COVID-19. The current law provides some support but could go further to help families who want to protect their loved ones with a Rare Disease.

Tell your story on social media using #istayhomeforrare Learn more about this new initiative to inform others of our rare stories and why it is so important to stay home during this time.

Thank you for your support and your action. Please reach out if you have questions.

I hope all is well with your families. Stay safe.

Lani Knutson

Advocacy Team Lead

RARE ACROSS AMERICA

As of right now, Rare Across America is still on!

Rare Disease Legislative Advocates (RDLA) schedules appointments for you with your Senators' and Representative's offices in your home state between August 3 and September 7, 2020. In addition, they provide resources on how to tell your story and what asks to present at the meetings.

Registration for this event runs from May 4 to July 3.

Attend RDLA's March 2020 Legislative In-Person Meeting and Webinar on April 23, 2020 at 12:00pm EST to learn about current legislation affecting the Rare Disease community. Register here.

Register to attend NORD's 2020 Living Rare, Living Stronger: NORD Patient and Family Forum in Cleveland, Ohio tentatively scheduled for July 18-20.

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