February 28, 2023 is the designated “Rare Disease Awareness Day” across the world.
Dup15q Syndrome is 1 of 7,000 Rare Diseases.
1 in 20 people will be diagnosed with a rare disease at some point in their life. Despite this, there is no cure for the majority 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.
300 million people living with a rare disease worldwide 72% of rare diseases are genetic
Together, we aim to raise awareness through education for our community, researchers, clinicians, and policymakers to bring equitable access to diagnosis, treatment, health, and social care as we work towards a more inclusive society. Equity in practice means meeting peoples’ specific needs and eliminating barriers preventing their full participation in society, social opportunities, equitable access to health and social care, diagnosis, and treatments.
Do you want to do more to make a social impact in 2023?
Here are some ways to get involved!
Create a Facebook Fundraiser
Consider creating a Rare Disease Day fundraiser for Dup15q Alliance on Facebook! It’s an easy way to raise awareness and share it with supporters and encourage them to help you raise money on Facebook.
Grab your 2023 Dup15q Awareness Day Tee designed by a Dup15q sibling!
Order your personalized T-shirt OR Hoodie for Rare Disease Day! Build your Believe Team with personalized Dup15q T-Shirts or Hoodies in honor of Rare Disease Day! 25% of your order is donated back to the Dup15q Alliance! Sales will close on 2/15/23
Sales are closed but you can shop from our other Dup15q SWAG here: Dup15q – Kaye Design Studio
Tell Your Story!
One of the best ways to advocate and raise awareness is to tell your story. This is a very effective way to help others understand your family’s perspective and needs in your community. Viewing the world from your family’s lens. Click the link below for a sample email to send to your local newspaper!
Tell your story on Capitol Hill
Rare Disease Week on Capitol Hill brings together rare disease community members from across the country to be educated on federal legislative issues, meet other advocates, and share their unique stories with legislators. Our friends at Everylife Foundation give you all the tools you need for each step of the way!
Light it up for Rare
Join the effort to light up a landmark on 02/28/2023. It could be your state capitol building, historic house, local school or university, stadium, bridge, place of business, point of interest, monument—the sky is the limit. Light it up Blue for Dup15q! Our friends at NORD make it easy and provide you with a toolkit and template letter to get started.
Contact Your Members of Congress
As a rare disease advocate, you are a very important part of the legislative process. You can make a difference by asking members of Congress to Join the Rare Disease Congressional Caucus. The Caucus provides a platform for discussing pressing policy issues and gives rare disease patients a voice on Capitol Hill.