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Sep. 12, 2016

TOPIC: Get Involved, Patient Stories, Patients & Members

Celebrating Awareness: One-Year Anniversary of Rare Disease of the Day

Posted by Christina Jensen

Rare Disease of the Day-feat imageThis summer marked our one-year anniversary of hosting the Rare Disease of the Day campaign on our Facebook page and website. It has been a productive campaign, sharing information on over 200 rare diseases, in line with NORD’s mission to educate and raise awareness.

As the hub for rare diseases, NORD finds it important to share a variety of information on its Facebook page, including reports on individual disorders with links to supporting resources. With over 38,000 followers, it’s rewarding to know that so many people are learning a little each day about a new rare disease. Whether it’s a condition affecting thousands or only one in a million, we’re honored to share resources for patients and families, and to also spread the word to those who may not know about the rare disease community and the challenges we face.

Throughout the year, it has been interesting to watch the community engage on the Rare Disease of the Day posts. Many of the posts have sparked conversations, connecting complete strangers and providing encouragement to friends and loved ones. Here’s a post from November when we shared a report on Narcolepsy. People were bonding over their diagnosis, connecting on their symptoms, sharing stories of misdiagnosis, and making jokes together. Our post about Turner Syndrome reminded us that using the word “disease” is not representative of all rare conditions and an important conversation ensued in the comments. We love to see when the community comments with photos and stories about patients affected by the diseases that are posted.

Because of the rarity of some of these diseases, there isn’t always much conversation going on in the comments of these posts, but we envision that someone is out there seeing it, and for the first time realizing that there is a community out there for them. They are not alone and they can connect through our Facebook page to maybe meet other patients who share their diagnosis or learn about an organization that can support them.

Throughout the campaign, people have been asking us how we select the rare disease each day and if we take requests. The campaign is automatically and randomly generated to select one of the 1,300 rare diseases, disorders and syndromes in NORD’s online Rare Disease Database. Rare Disease of the Day is just one of the ways that NORD is educating patients, doctors and the general public about rare diseases as part of our mission.  Awareness sets the field for progress and we are grateful to all of our followers for every like, share, and comment – together we are strong.

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