Hey, everyone! It’s that time of year, again. Time to raise awareness for Rare Disease Day on February 28th. Living with a rare disease isn’t a cause for celebration. But, joining in solidarity with others diagnosed with a rare disease is an awesome way to educate yourself and others about rare disease research. It’s a time to learn about the different types of rare diseases on the Rare Disease Registry. Most importantly, it’s a time to raise hope and support for finding a cure and better treatment plans for rare diseases.
I received my rare disease diagnosis in 2009 for autoimmune hepatitis, a rare liver disease. Since 2009, I’ve been on a personal quest to learn as much about autoimmune hepatitis (AIH), AIH treatment protocols, AIH research, and learning to live with AIH. If you are learning to live with a rare disease, you may be aware of Rare Disease Day and the ways you can participate in this international event. Participating in Rare Disease Day events is a huge balm for your soul, a time to take a breath, reach your hand out to others living with rare diseases and raise some hope for the future.
I don’t know if scientists will ever find a cure for AIH, autoimmune diseases, cancer, or rare diseases in my lifetime. By participating in Rare Disease Day, I feel more hopeful and less isolated by celebrating rare disease awareness and life with others in the Rare Disease Community. Here’s how you can participate. Follow Rare Disease Day on Twitter, Facebook, Pinterest, Instagram, YouTube and other social media sites. Share your rare disease story. Create a Pinterest board featuring information about your rare disease. Add a Rare Disease Day Twibbon on your Twitter profile. Check the Rare Disease Day list for finding community and international events; free, downloadable Rare Disease Day educational resources; the official Rare Disease Day YouTube Channel and more ways you can participate in Rare Disease Day.
Often, it’s the smallest actions that create the biggest impact in the world. Raise your hand in support of Rare Disease Day on February 28th. You’ll find seven ways to get involved with Rare Disease Day on the Rare Disease Day website. Find your voice and use your creativity to let the world know YOU support Rare Disease Day and WHY it’s important to YOU.
Rare Disease Day YouTube Channel – https://www.youtube.com/user/rarediseaseday
Rare Disease Day US Facebook page – https://www.facebook.com/RareDiseaseDay.US/
Rare Disease Day Facebook page – https://www.facebook.com/rarediseaseday/
Rare Disease Day US Twitter page – https://twitter.com/RareDayUS
Rare Disease Day website – http://www.rarediseaseday.org/
Rare Disease Day Handprints Across America project – http://rarediseaseday.us/get-involved/handprints-across-america/
Rare Disease Day Downloadable Resources – http://www.rarediseaseday.org/downloads
Seven Ways to Get Involved with Rare Disease Day – http://www.rarediseaseday.org/article/get-involved
NORD – National Organization for Rare Disorders – https://rarediseases.org/?s=A&post_type=rare-diseases
Autoimmune Hepatitis Research Network – http://medicine.iupui.edu/gast/programs/autoimmune/