Rare Disease Week 2020
Updated: Feb 18
If you plan to attend, your next steps are:
Read Rob Sunris' blog post on last year's Rare Disease Week.
Attend the Information Webinar on December 12th, especially if you are a first time attendee. Register here.
Let Lani know if you received a travel stipend from RDLA. Decisions will be emailed to you by December 20th.
Apply for the Cure CMD travel stipend. Scholarship applications must be received by January 10, 2020 and will only be considered for those who:
- Have applied for the RDLA Travel Stipend (regardless of outcome)
- Live in the United States
- Will attend Rare Disease Week on Capitol Hill in person for a minimum of three days
Other important steps:
Register for Rare Disease Week. Registration starts January 2nd on the RDLA website.
Mark your calendar for the RDLA In-depth Webinar on April 13th.
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.
Rare Action Network
Not only is Charlene York a Cure CMD volunteer and advocacy team member, she is also the NORD Ohio Rare Action Network Volunteer State Ambassador. One of her current projects is to establish a Rare Disease Advisory Council (RDAC) in Ohio. Recently her team introduced a bill. Check out her press conference.
Several other states are working on the same type of legislation or recently passed legislation establishing a Rare Disease Advisory Council. Check out the Rare Action Network in your state!
The RareVoice Awards were given out last night in D.C. by RDLA. Learn about these amazing advocates and how they are using their story to help others with Rare Diseases. Be inspired!
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.
Start thinking about how you want to celebrate Rare Disease Day on February 29, 2020. Check out some ideas from NORD.