Rare Disease Day is an annual, international advocacy effort to globally recognize the challenges of living with a rare disease. Families, communities, and nations face these challenges when they deal with the medical and health effects of rare diseases. Rare Disease Day is celebrated each year on the last day of February and this year it will be observed on Friday, February 28, 2014.


Awareness Cards

In an effort to help the rare disease community spread awareness for all rare diseases, the Histiocytosis Association has created Rare Disease Day awareness cards. These cards have the Rare Disease Day logo and important website addresses on the front and quick facts about rare diseases on the back. Spreading awareness has never been so easy. We only have 2,000 cards available. Due to the overwhelming response - we have distributed all the available Rare Disease Day awareness cards!

2014 Rare Aware Card

If you are still interested in distributing these cards on Rare Disease Day, please have the Rare Disease Day awareness card Rare Disease Day Card 2014 printed at your local office supplies store.

Rare Diseases Unite

Please visit the National Organization for Rare Disorders (NORD) or the European Organization for Rare Diseases (EURORDIS) to see the rare disease awareness opportunities they have to offer. Let's join in the efforts that these organizations have arranged for Rare Disease Day and work together in raising awareness for rare diseases. We support these efforts and encourage the Histio Community to unite with others affected by rare diseases by participating in one of these organizations' many endeavors. On this day, let our voices be one; remember, alone we are rare but together we are strong. Take action today!


Check out NORD's Rare Disease Day Video for 2014. Hey! Is that Histio Warrior Ian Brown I see?

Histio Community Takes Action


Handprints Across America



Patricia Freeman, grandmother of Histio Warrior Tyler Freeman, initiated a photo for Handprints Across America at Casey Jenkins' fundraiser, Casey's Bull Roast, on February 15. Over 300 people participated by holding up their hands and holding the Rare Disease Day logo.


Proclamation Issued in Dunwoody, GA


Dr. Betty Wills, grandmother of Histio Warrior Katherine Dowd, convinced the mayor of Dunwoody, Georgia, to issue a Proclamation to Cure Histiocytosis to support both histiocytosis and rare diseases.

Histio Represented at NASDAQ

Amicus Therapeutics, Inc., a biopharmaceutical company at the forefront of therapies for rare and orphan diseases, will visit the NASDAQ MarketSite in Times Square in celebration of Rare Disease Day 2014. Amicus will be joined by representatives from several patient advocacy organizations including the Global Genes Project, the National Organization for Rare Disorders, the Acid Maltase Deficiency Association, the Fabry Support and Information Group, the National MPS Society, the Histiocytosis Association, the National Fabry Disease Foundation, the National Gaucher Foundation, the National Tay-Sachs & Allied Diseases Association, Jonah Has Just Begun and the United Pompe Foundation. In honor of the occasion, John Crowley, Chairman and CEO of Amicus will ring the Closing Bell on Friday, February 28, 2014.

Raising Awareness with LEGOs

           


Histio Warrior Jim Davis from Nixa, MO, built this amazing LEGO structure to help raise awareness for Rare Disease Day in his community. This display is viewable to everyone stopping by  the local library. Jim has even bigger plans for September to commemorate Histiocytosis Awareness Month.


In The News


Histio Warrior Joey Holt shares his story on YouTube. Channel 19 News (Cincinnati) interviewed Joey on Friday, February 28, Rare Disease Day. Read the article.

Keep checking back to this page for the latest efforts taken to support Rare Diseases Day. We will add new information as it becomes available.

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