What is a Rare Disease Advisory Council? (RDAC)
Please read the text of the conversation I had with Rep. Ferguson's staffer, Robert Redding, on March 1, 2022. It is an impassioned plea for his support for important legislation pending in the House of Representatives.
I ask you to join us in contacting Rep. Ferguson. Our power of voice is in our numbers. Please join us.
Chris Duane
Welcome to our RARE DISEASE DAY information page!
Thank you for visiting our Rare Disease Day page.
Rare Disease Day is the globally-coordinated movement on rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease.
Since its creation in 2008/2009, Rare Disease Day has played a critical part in building an international rare disease community that is multi-disease, global, and diverse– but united in purpose.
Rare Disease Day is observed every year on 28 February (or 29 in leap years)—the rarest day of the year.
Rare Disease Day was set up and is coordinated by EURORDIS and 65+ national alliance patient organization partners. Rare Disease Day provides energy and a focal point that enables rare diseases advocacy work to progress on the local, national and international levels. (www.rarediseaseday.org)
For more information about Rare Disease Day, visit The National Organization for Rare Diseases and RareDisaseDay.org
These links connect you the FOUR major asks the Rare Disease community is speaking to Congress about during the last week of February. Feel free to read them, peruse them, and reach out to me with any questions you may have.
- (BENEFIT) Act Ensure Patient Perspectives Are Included in FDA Benefit-Risk Assessments: Cosponsor the S. 373/H.R. 4472, the Better Empowerment Now to Enhance Framework and Improve Treatments
- Access to Genetic Counselor Services Act H.R. 2144 / S. 1450
- Newborn Screening Saves Lives Reauthorization Act, H.R. 482/S. 350
- Join The Rare Disease Caucus
- Contact your Congressional Representatives and Senators and ask them to join the Rare Disease Congressional Caucus.
Rare Disease Week On Capitol Hill
This link will take to the Every Life Foundation Website which leads the organization of Patient Led Advocacy meetings with Rare Disease Caucus Members (like The Foundation for Casey's Cure), sets up meetings for for us to speak with the Representatives and Senators from our state, and prepares documents (called One-pagers) on the legislation that's relevant to our group. I urge you to reach out to me, Chris Duane, Casey's mom and participant in Rare Disease Week on Capitol Hill, if you have rare disease or a spouse or child with a rare disease so we can become your voice too.