February 2014 – Rare Disease Day Awareness

1 Feb

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 facesNotice 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 awarenessSpread a little rare disease day love during February and every day by becoming a Rare Disease Day friend.

Namaste,

Mags

Rare Disease Day Awareness resources:

What is Rare Disease Day?  Rare Disease Day.org., http://www.rarediseaseday.org/article/what-is-rare-disease-day

Rare Disease Day USA, http://rarediseaseday.us/about/history/

Global Rare Disease Patient Registry and Data Repository (GRDR) website  http://rarediseases.info.nih.gov/research/pages/43/global-rare-disease-patient-registry-and-data-repository

Rare Disease Day Around the World events: http://www.rarediseaseday.org/

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

Chronically Awesome, meets the needs of chronically ill people by providing online support art therapy and creative story telling programs.http://chronicallyawesome.org/

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

Rare Disease Day.org on Facebook – press the Like button - https://www.facebook.com/rarediseaseday

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