Unless you’ve been diagnosed with a rare disease, you might not associate February with raising awareness for rare diseases. What could be more appropriate during the month of love than to raise awareness for rare disease patients? Since my diagnosis with autoimmune hepatitis (AIH) in 2009, I have joined the Rare Disease Day awareness team to advocate for rare disease research, education and support.
I’m kicking off Rare Disease Day 2014 by sharing some of the great ways you can learn about Rare Disease Day events. Get involved in promoting Rare Disease Day awareness. Learn more about the different types of rare diseases and the patients learning to live with rare diseases on a national and international level.
Even in the face of adversity, there is peace and beauty. Looking for a good love story? During this month, read, watch, and hear some of these personal accounts from rare disease patients learning to live with a rare disease diagnosis. Rare disease patients live each day, knowing there isn’t a cure for their rare diseases. See the smiles on their faces. Notice the support they receive from family, friends, their personal caregivers, their medical teams, and the kindness of strangers, often members of our wonderful rare disease support associations.
Even in the face of adversity, there is hope. Interested in raising rare disease awareness? Searching for a way to participate in this annual rare disease day event? Check out these terrific rare disease day resources. Open up your heart and get involved in promoting rare disease day awareness. Spread a little rare disease day love during February and every day by becoming a Rare Disease Day friend.
What is Rare Disease Day? Rare Disease Day.org., http://www.rarediseaseday.org/article/what-is-rare-disease-day
National Institutes of Health (NIH) National Center for Advancing Translational Science, Office of Rare Diseases Research (ORDR), Autoimmune Hepatitis Overview, http://rarediseases.info.nih.gov/gard/5871/autoimmune-hepatitis/resources/1
Rare Disease Day.org Awareness Campaign resources, Become a Rare Disease Day advocate via YOUR social media sites, http://www.rarediseaseday.org/article/get-involved-download-our-communication-materials