Rare Disease Day 2014

Across North America and Europe more than 60 million patients have been diagnosed with one or more of the 6000+ "rare" diseases. If you were to broaden the inquiry to encompass the world you would need to add millions more. Almost every patient has family or friends that help them. I think it would be safe to say that worldwide, more than 1 billion people are affected by rare diseases!! That is staggering to think about! About half of those affected are children.
 
So what exactly is a rare disease? In the European Union, a rare disease is one affecting fewer than 1 in 2000 patients. In the United States, it is defined as affecting fewer than 200,000 Americans at any given time.

Symptoms vary, not just between diseases, but also largely from patient to patient with the same diagnosis. 80% of rare diseases have identified genetic origins. The remaining 20% result from infections (both viral and bacterial), allergies and environment, and most are degenerative and proliferate.
Misdiagnosis is a major problem for rare diseases, often because a common symptom will hide the underlying disease.  In Pulmonary Hypertension patients, we are often diagnosed early on as having asthma, or COPD. Lupus patients are frequently thought to have the flu in the early stages of diagnosis, or simply an allergy.

What is Rare Disease Day? Rare Disease Day began in Europe in 2008, coordinated by EURODIS on the international level, and National Alliances and Patient Organizations (“umbrella organizations that regroup several rare disease organizations in a given country or region”) on a regional level. The goal for the campaign is to raise awareness, mainly in the general public, about the impact of rare diseases. Last year, in 2013, more than 70 countries participated, with more expected this year. This year’s objective is “for WHO (World Health Organization) to recognize the last day of February as the official Rare Disease Day and raise increasing awareness for Rare Diseases worldwide.” 

Join Together for Better Care! Caring for those living with a rare disease is multi-faceted, requiring medication, physical assistance or equipment, medical consult, physical therapy, social services, respite for the family, and more. Worldwide there is a broad lack of scientific knowledge and quality information on rare diseases, resulting in delayed diagnosis, along with increased financial and social burdens.
Because of the increased awareness created by campaigns like Rare Disease Day things have gotten, and can continue to get, better! Awareness of rare diseases has allowed the implementation of more comprehensive approach to care. Better public health policies have been developed across the world. Cooperation in clinical and scientific research and an international sharing of scientific knowledge on all rare diseases has led to the development of new diagnostic and therapeutic procedures!

Now, how can you get involved? There are several ways YOU can get involved, and increase awareness… without even leaving your desk!

            Become a Friend- www.rarediseaseday.org/become-a-friend/

Patient organizations, health care professionals, drug developers, public authorities, and any association with an interest in rare diseases are encouraged to become Friends of Rare Disease Day! Just fill out the form, and join the network!

            Raise and Join Hands- www.rarediseaseday.org/join-your-hands/

Raise your hands in a symbolic gesture before The Day to show your solidarity with rare disease patients, take a picture, and upload it to the site!

            Tell Your Story- www.rarediseaseday.org/tell-your-story/

Tell us how your life has been affected by a rare disease, share words of encouragement, or an uplifting story.

Download and Share Communications Material- www.rarediseaseday.org/get-involved-download-our-communication-materials/

Social Media-

            Facebook- www.facebook.com/rarediseaseday

            Twitter- www.twitter.com/rarediseaseday

            YouTube- www.youtube.com/rarediseaseday

            Flicker- www.flicker.com/rarediseaseday

            Thunderclap- www.thunderclap.it/projects/8543-rare-disease-day2014-feb-28

                                    Wait… what’s that?!

Share a single message (In this case “Today is #RareDisease Day, the day to put rare diseases in the spotlit! Show your solidarity today http://thndr.it/1fkAYmz”) simultaneously in one THUNDERCLAP of awareness!

Want to learn more? Go to www.rarediseaseday.org for more information on Rare Disease Day, for a list of sponsors, and to become involved.