Lani Knutson, Advocacy Team Leader

Dec 5, 20192 min

Rare Disease Week 2020

Updated: Feb 18, 2021

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!