What Is Rare Disease Day?
Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.
Building awareness of rare diseases is so important because 1 in 20 people will live with a rare disease at some point in their life. Despite this, there is no cure for the majority of rare diseases and many go undiagnosed. Rare Disease Day improves knowledge amongst the general public of rare diseases while encouraging researchers and decision-makers to address the needs of those living with rare diseases.
Raising Awareness Of What It Means To Be Rare
There are over 300 million people worldwide living with a rare disease. Together across borders, and across the 6000+ rare diseases we work towards more equitable access to diagnosis, treatment, care, and social opportunity.
Our key message for Rare Disease Day 2021 is that:
Rare is many.
Rare is strong.
Rare is proud.
Support Our Efforts
Make a donation to PWSA | USA to empower the PWS community with the resources and tools they need to raise awareness and effectively advocate for individuals with PWS and their families.
PWSA | USA Rare Disease Day 2021 Coloring Challenge
Email a photo including the name of artist, age, and place of residence, and we’ll feature your page in our Rare Disease Day Facebook Album!
Download Your “Show Your Stripes” Coloring Page Here
Share Your Rare Story
Be part of Rare Disease Day by sharing your story with others and sending a message of solidarity! You can write about your story and also submit photos or a video testimonial.
Send An Email Or Letter To Your Lawmakers
As Prader-Willi syndrome is considered a “rare disease,” extra effort is needed to bring attention to the needs of the PWS community. Use this letter/email template to contact your lawmakers about PWS.
Download The Email/Letter Template Here
Visit Our Public Policy Action Center
Visit our Public Policy Action Center and connect with your local senators and representatives to help bring awareness to the needs of individuals with PWS and their families.
Get Involved On Social Media
All you could possibly want to add a little Rare Disease Day flare to your social media and fill your feed with great images to #ShareYourRare story.
Don’t forget to use our official hashtags for the month:
#ShareYourRare
#ShowYourStripes
#ILoveSomeoneRare
#RoarForTheRare
#RareDiseaseDay2021
#RareIs ____________(Fill in what Rare is to YOU)
Jennifer Bolander has been serving as a Special Education Specialist for PWSA (USA) since October of 2015. She is a graduate of John Carroll University and lives in Ohio with her husband Brad and daughters Kate (17), and Sophia (13) who was born with PWS.
Perry A. Zirkel has written more than 1,500 publications on various aspects of school law, with an emphasis on legal issues in special education. He writes a regular column for NAESP’s Principal magazine and NASP’s Communiqué newsletter, and he did so previously for Phi Delta Kappan and Teaching Exceptional Children.
Evan has worked with the Prader-Willi Syndrome Association (USA) since 2007 primarily as a Crisis Intervention and Family Support Counselor. Evans works with parents and schools to foster strong collaborative relationships and appropriate educational environments for students with PWS.
Dr. Amy McTighe is the PWS Program Manager and Inpatient Teacher at the Center for Prader-Willi Syndrome at the Children’s Institute of Pittsburgh. She graduated from Duquesne University receiving her Bachelor’s and Master’s degree in Education with a focus on elementary education, special education, and language arts.
Staci Zimmerman works for Prader-Willi Syndrome Association of Colorado as an Individualized Education Program (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Children’s Hospital in Denver supporting families and school districts around the United States with their child’s Individual Educational Plan.
Founded in 2001, SDLC is a non-profit legal services organization dedicated to protecting and advancing the legal rights of people with disabilities throughout the South. It partners with the Southern Poverty Law Center, Protection and Advocacy (P&A) programs, Legal Services Corporations (LSC) and disability organizations on major, systemic disability rights issues involving the Individuals with Disabilities Education Act (IDEA), Americans with Disabilities Act (ADA), and the federal Medicaid Act. Recently in November 2014, Jim retired.