Cure CMD Advocacy Team Update

June 2020

Cure CMD Advocacy Team,

This past month, a social worker contacted Cure CMD on behalf of a young patient with CMD. The girl and her mother are facing deportation back to their home country of Iraq. The social worker and the girl's doctors are working frantically to prevent deportation, because she would not be able to receive the care she needs in Iraq.

Cure CMD was able to provide letters of support from clinicians and researchers stating how important the girl's care in the US is. Additionally I was able to connect the social worker with the offices of the US Senators in that state, using contacts provided by RDLA.

While the case has not been settled, I share this story to illustrate how important advocacy is. We may not see the fruits of our advocacy immediately, but we are laying foundations and creating relationships that we can rely upon in a crisis.

I encourage you to pick one item from the events below to participate in. Finding the time to do it is hard, but I'm confident your efforts will pay off in the long run.

As always, I hope you and your family are well. Be safe!

Lani Knutson

Advocacy Team Lead

Rare on the Road Goes Virtual!

Participants will engage in interactive tutorials on how to tell their rare story and how to get involved in advocacy. This event is open to all rare disease community members and will feature special guest speakers, including a rare disease patient and a policy expert.

RARE ACROSS AMERICA

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. This year, meetings will take place either virtually or in-person depending on the office and the state and local rules. In addition, RDLA provides resources on how to tell your story and what asks to present at the meetings.

Registration is open until July 3rd.

Encourage the young adult advocates (ages 16-30) in your life to join YARR and connect with other young advocates.

The next RDLA Monthly Webinar will take place on Thursday, June 18th. The RDLA Monthly Meetings are an opportunity to educate patient advocates about pressing health policy topics so that they can be successful legislative advocates. Register to join on the RDLA website.

Find out what's happening in your state legislature by joining the Rare Action Network supported by NORD.

Register to attend NORD's 2020 Living Rare, Living Stronger: NORD Patient and Family Forum scheduled for July 18-19. This event is now happening virtually.

Register to attend Global Gene's A RARE Patient Advocacy (un)Summit. This event will include a variety of interactive and educational online events, meet-ups, workshops and performances September 14-25, 2020.

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