Facing a Rare Disease

February 28 marks Rare Disease Day. For many families facing a rare disease, such as epidermolysis bullosa, it can be as taxing physically and emotionally on caregivers as it is on those diagnosed. Rare Disease Day is an international day of awareness established to educate those in the medical field, those in media, and those who create and enforce public policy that can directly impact these families.

As with previous years, Rare Disease Day 2015 will be comprised of campaigns across the globe intent on reaching hundreds of thousands of people and generating media buzz to be capitalized on by bloggers, tweeters, and interactive Facebook communities like ours in this era of social media and grassroots campaigning.

Although Rare Disease Day started in Europe in 2008 by EURORDIS and the Council of National Alliances, it has grown into a collaborative international effort worldwide connecting health professionals, legislators, researchers, and those in industries serving rare disease communities such as the EB community. Last year, a new record-high 84 countries participated in the awareness day.

For many families facing a rare disease, much of the battle is locating support resources, and accurate, timely health information. Some helpful sites focused primarily on providing relevant information about thousands of rare disease, such as EB, include:

For more information about Rare Disease Day or to see what related events may be taking place near where you live, visit www.rarediseaseday.org/. If you have been planning your own event to reach area media on the designated date, make certain to post it at the Rare Disease Day site so others can come out to support your campaign.

EB & Rare Disease Day 2014

This month marks Rare Disease Day, an annual day which observes the prevalence of rare diseases and their impact on the people living with them. It was started six years ago by EURORDIS and the Council of National Alliances, and its recognition has grown beyond being a European and become a world occasion with more than 1,000 events held since its launch.


The focus behind this one day is in line with what EB patients, families and their advocates set out to do every day – educate people; inspire others to become involved in advocacy, fundraising and research; and instill a better understanding of the kinds of challenges and needs facing the rare disease community.


Rare Disease Day has also been embraced by those in highly influential roles to garner more attention for the topic, including politicians and entertainers. Last year, over 70 countries from around the globe took part in what became the largest Rare Disease Day ever. On its own website, the coordinators of the event state their ultimate goal is for the World Health Organization to recognize the last day of February each year as one of its official days to help build international awareness of rare diseases.


Here in the EB community, it can be a perfect opportunity for families impacted by EB to speak up. Families could take the occasion to contact their elected representatives about any upcoming or current bills that could impact insurance coverage or funding that might benefit those afflicted with rare diseases.


So what other things could you do on a smaller scale to promote Rare Disease Day in your own community? Share information about the international event with your child’s school to explore opportunities to promote it there. Contact local newspapers and television channels. Reach out to any civic or social groups in the area to encourage them to host their own awareness event. Let your company’s HR department know about the annual event and inquire about any opportunities to promote there. Take to your social media channels like Twitter, Facebook, Google+ and LinkedIn and spread the word!


To read up about Rare Disease Day 2014, be sure to visit the official website at www.rarediseaseday.org.

A Closer Look at Rare Disease Day

Today marks an international event first established in Europe in 2008 by the European Rare Diseases Organization (EURORDIS) and now embraced by countries all over the world, including the U.S. and the National Organization for Rare Disorders (NORD) as Rare Disease Day, observed each year on the last day of February. Its significance to EB families is enormous as it collectively unites a number of groups – patients and their families, patient advocacy organizations, the medical community, scientific community and educators and more – to draw greater attention to some of the world’s rarest diseases as a matter of significant public health interest.

In 2009, the U.S. began working closely with EURORDIS as part of a strategic partnership to combine forces across rare diseases on a number of initiatives, including promotion of Rare Disease Day activities and the development of an online rare disease blog archive. Click here to check out this informative resource.

A “rare disease” is defined in the U.S. as one that affects fewer than 200,000 people, a definition originating from the Orphan Drug Act of 1983. According to NORD, there are about 7,000 rare diseases in existence impacting a total of around 30 million Americans!

On this day, February 28, 2011, hundreds of patient organizations and their partners will be hosting events at national and regional levels to raise awareness about various rare diseases and the people whose lives are directly or indirectly impacted by them.

Each year, there is a theme for Rare Disease Day. This year it’s “Rare But Equal,” which focuses on many of the inequalities that impact the resources and attention rare diseases often receive. Since this is only the third year of observance in the U.S., NORD’s major objectives in 2011 are to continue building awareness of the observance using such tools as social media, traditional media and stories and events generated from the patient advocacy groups themselves. The organization also plans to develop a Rare Disease Physician database which should prove to be invaluable to such groups as EB families who may struggle to locate the right resources for support or medical care.

Are you aware of any Rare Disease Day events going on in your state? Twenty-seven states have issued a formal proclamation of Rare Disease Day in their respective states.

One easy way that you can get involved is right from your computer. Lundbeck Inc. is donating $1.00 for each individual click on its Raise Your Hand awareness banner ad campaign (up to $10,000) to spread the word about Rare Disease Day. Both Rare Disease Day USA and EB Friends have the Raise Your Hand banner ad on their websites’ home pages (you don’t even have to be an EB Friends member or log in to click!) Money raised will be contributed to a general research fund managed by NORD. In 2010, a similar campaign led to a $10,000 donation for NORD.


Rare Disease Day USA

European Rare Diseases Organization

National Organization for Rare Disorders

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Free EB Information Resources

Resolve to Speak Up for EB Families

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