Rare Disease Day is almost here!
What is Rare?
If you’ve found this blog, it’s safe to say Perthes has touched your life in some way! Before that, how often did you hear the word “Perthes?” In North America the incidence of Perthes disease is roughly 5 in 100,000 persons. That may be isolating. But you are not alone. The world is full of individuals with rare disorders, just like Perthes, and on February 28th we all join together to advocate for the common good.
In the US, a rare disease is one affecting less than 200,000 Americans at any given time. That translates to limited funding for research as well as few participants in research. A trickle down effect begins. There is little foundation for evidence based practices in treatment. Funding for treatments and insurance coverage can decrease. Promising pharmaceutical advances are abandoned and drugs never make it to clinical trial much less the people who need them.
It all adds up!
These “rare” disorders total to more than 7,000 and affect over 30 million Americans! When we join together, the Rare Disease community grows. Together we can make our voice heard and influence health policy as well as research.
Rare Disease Day
Rare Disease Day is an international event organized by EURODIS Rare Diseases Europe and in 2009 National Organization for Rare Disorders (NORD) introduced the day to the United States. Since that time Rare Disease Day has continued to grow both nationally and internationally.
Each year organizations work to bring awareness to rare diseases through advocacy events, online communities, social media engagements, and educational events. Individuals are encouraged to host events. Share your story and photos on social media #RareDiseaseDay.
Become a Rare Mover
NORD has launched a virtual campaign to mobilize the rare community! Register create a team to start fundraising. It’s simple!
The goal is to collectively walk, run, or bike 7,000 miles during the month of February. Ask friends, family, and people in your community to contribute pledge dollars. Just visit PLEDGEIT.ORG/GIVE/NORD to get started!
The Handprints Across America® Gallery was initiated to show the impact of Rare Disease Day. Print out the Handprints Across America Flyer and take a picture of yourself, your family, friends, colleagues holding it. Share that on Instagram or Twitter #HandprintsAcrossAmerica. Include why Rare Disease Day is important to you, why you are getting involved, and what rare disease you are impacted by.