Five Ways for Exceptional Parents to Get Involved with Rare Disease Day- Tuesday, February 28, 2017

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Rare Disease Day is an international awareness campaign that takes place on the last day of February each year. It is the one day the world comes together to recognize people with rare diseases with the goal to raise awareness among the general public and decision-makers about rare diseases.

Why do rare diseases need an awareness day? As it turns out, rare diseases are not so “rare.” There are approximately 7,000 rare diseases that combined affect 30 million Americans, or 1 in 10 of us, and more than half of people with rare diseases are children. Each Rare Disease Day is an opportunity to highlight the needs of this community. Every person can make a difference and help.

Rare Disease Day was founded in 2008 by a patient advocacy organization in Europe called EURORDIS. Since NORD, the official Rare Disease Day sponsor in the United States, got involved in 2009, we have seen a tremendous increase in activity on and around Rare Disease Day. What started as only a handful of events around the country has expanded to recognition in each state through various types of events, media coverage, and more!

We are sincerely moved by how Rare Disease Day has expanded in the past ten years and it could not have happened without the support from patients and families all across the United States. To continue the growth of Rare Disease Day, we need families to continue getting involved. Below are five ways for your exceptional families to get involved this Rare Disease Day on Tuesday, February 28:

 

1. Take Part in a Rare Disease Day Advocacy Event in Your State

Rare Disease Day Advocacy Events provide the opportunity for families to speak in front of elected officials in their state and share with them the issues that are impacting their lives the most to help advocate for change. There are over thirty of these events happening across the United States. An advocacy event is a great chance for families to stand together and advocate on a monumental day for their loved one who is affected by rare disease.
Register for an event near you.

 

2. Organize a Community Event

The majority of events that take place on Rare Disease Day serve to raise awareness of rare diseases among one’s community. There are many ways to do this and the events provide a fun opportunity for a family to organize something small or large together. Some ideas include organizing a walk, setting up a tabling event at your local grocery store, or hosting a bake sale! Click here for more ideas and how to get started.

 

3. Send in your Handprints Across America Submission

Rare Disease Day does not require families to host or attend events, and on the rarediseaseday.us website there are plenty of ways to get involved remotely. One opportunity that your family can take advantage of now is NORD’s annual Handprints Across America campaign. This photo/story gallery shows individuals and families celebrating Rare Disease Day all across the United States in a variety of settings. Get the family together for a photo opportunity and send it in to the website for inclusion in the gallery.
Get started here.

 

4. Work on Rare Disease Day Activities as a Family

The Rare Disease Day U.S. website provides activities for families to download, print and enjoy together. Downloadable activities include coloring pages, word searches, a trivia challenge and more! These downloadables offer an easy and relaxing activity to work on together while also honoring Rare Disease Day.

Download an activity here.

 

5. Hang a Rare Disease Poster in a Public Setting

Families can also raise awareness in their community by printing and hanging Rare Disease Day posters together. Download the official poster, print copies of it at home or at a local print-shop, and go on an outing together to hang the posters around the community. This is a way to make others in your neighborhood aware of Rare Disease Day and get them thinking about rare diseases.
Download and print the poster here.

 

There are opportunities for families to get involved with Rare Disease Day both big and small. Getting involved in any way makes a very important impact for the community and raises awareness for the issues that are being faced. The above examples were just a sampling of how to get involved. Please visit rarediseaseday.us to learn of other events happening near you. We’d love to hear your plans! Share them with us on social media by using #RareDiseaseDay in your posts!

 

-This blog was brought to us by NORD for our ep family

The National Organization for Rare Disorders (NORD)® is the leading independent advocacy organization representing all patients and families affected by rare diseases.  NORD is committed to the identification, treatment and cure of the 7,000 rare diseases that affect 30 million Americans, or 1 in every 10 people.  NORD began as a small group of patient advocates that formed a coalition to unify and mobilize support to pass the Orphan Drug Act of 1983. For more than 30 years, NORD has led the way in voicing the needs of the rare disease community, driving supportive policies and education, advancing medical research, and providing patient and family services for those who need them most.  NORD represents more than 250 disease-specific member organizations and their communities and collaborates with many other organizations in specific causes of importance to the rare disease patient community. www.rarediseases.org.