• Lani Knutson

Rare Disease Week November 2020

Rare Disease Week on Capitol Hill is February 25-28, 2020. The Cure

CMD Advocacy Team is looking for more members to attend.


Want to join us in D.C in February?


If you plan to go, please

  • Let Lani Knutson (Cure CMD Advocacy Team Lead) know that you plan to attend.

  • Apply for a travel stipend from RDLA. The deadline is December 2. Check the RDLA website for instructions. When completing the application for the travel stipend, please indicate:

Organization: Cure CMD

Relationship to Organization: Community Member, Patient Advocate Rare Disease Affiliation: Congenital Muscular Dystrophy Relation to Rare Disease Community: Affected Individual/Family Member of Affected Individual

Explanation: Tell your story and why attending RDW is important to you. Be sure to mention if you are a first time attendee, a youth or teen advocate, from a rural area or distant state, or any thing else that makes you stand out.


After you've done that,

  • Let Lani know if you received a travel stipend from RDLA. Decisions will be emailed to you by December 20th.

  • Register for RDW starting January 2nd on the RDLA website.

  • Attend the Information Webinar on December 12th and the In-depth Webinar on April 13th, especially if this is your first time at RDW. Registration information about these webinars will be coming soon.

  • Book a hotel room, book an Airbnb, or call a friend or family member who lives in or near Washington D.C.

  • Arrange for transportation to and from Washington D.C. See the RDW schedule here to help plan your travel.

  • Put together your one-pager. See the Cure CMD template here.

Disability Employment Incentive Act

(S.255 / H.R 3992)


The Muscular Dystrophy Association recently endorsed the Disability Employment Incentive Act (S.299 and H.R.3992). This bill aims to address the high unemployment rates among working age adults who have a disability. Learn more about the bill and how it plans to accomplish this task. Cure CMD also endorses this bill and agrees that this issue needs to be

addressed. Contact your legislators and ask them to support this bill.

  • I know I keep including this action item but the Newborn Screening Saves Lives Reauthorization Act still has not been passed in the Senate. To contact your Senators asking them to cosponsor S 2158, click here.

  • Check out recent E-Blasts from Rare Disease Legislative Advocates to learn about current legislation. If you haven't already, sign up to receive these by email each month.

  • Register to attend the RDLA Monthly Legislative Webinar on November 21st from 12pm-1pm EST. These monthly meetings inform you of developing legislation and how you can help get them passed. Register here to attend.

  • Encourage your Senators and Representative to attend the next Rare Disease Congressional Caucus Briefing on December 4th from 11:30am-12:30pm. You can attend too! Learn more about the briefing and register to attend.

  • Recently, the Centers for Medicare and Medicaid Services (CMS) issued a response to the 180 members of the House of Representatives who signed a letter asking the agency to drop noninvasive ventilators from the agency’s competitive bidding program. Contact your Senators or Representative and voice your concerns on this matter.

  • Register to attend the RareVoice Awards on December 4, 2019 in Washington D.C. The RareVoice Awards is an event to educate Congress on rare disease issues and celebrate advocates who give rare disease patients a voice on Capitol Hill and state legislatures.

  • Start thinking about how you want to celebrate Rare Disease Day on February 29, 2020. Check out some ideas from NORD.

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