Rare Disease Day Awareness February 28 - 29th
Author: National Organization for Rare Disorders (NORD) : Contact: rarediseases.org
Published: 2015-02-13 : (Rev. 2017-06-26)
Synopsis and Key Points:
Social media campaign, #1in10, to raise awareness for the 10% of Americans living with a rare disease.
The National Organization for Rare Disorders (NORD)®, a leading independent, non-profit organization committed to the identification, treatment, and cure of rare disorders and official U.S. sponsor of Rare Disease Day® on February 28, announces a new social media campaign, #1in10, to raise awareness for the 1 in 10 Americans living with a rare disease.
An international, awareness-raising event that takes place on the last day of February each year (February 28 or February 29 in leap years), the rarest day on the calendar. It is the one day every year when countries and patients around the world come together to raise awareness of the 7,000 rare diseases and the challenges faced by people living with rare diseases. Established in Europe in 2008 by EURORDIS, Rare Disease Day has grown to include more than 80 countries and thousands of patient organizations that host events around the world. In 2009, EURORDIS asked NORD to launch Rare Disease Day to the U.S. Learn more at rarediseaseday.us/ and on Twitter at @RareDayUS.
"It's astounding that there are just as many Americans living with a rare disease as there are people who are left-handed," said Lisa Phelps, director of marketing and community relations at NORD. "We are launching this campaign for everyone who has a rare disease, their families, caregivers, nurses and doctors to help raise important awareness for this major public health issue and the need for safe, new treatments."
For the 7,000 known rare diseases, less than 400 have FDA-approved treatments.
There are 30 million Americans who have a rare disease defined as one that affects fewer than 200,000 people and two-thirds of these patients are children. Many rare diseases are chronic and life-threatening.
Rare Disease Day takes place every year on the last day of February (February 28 or February 29 in a leap year), the rarest date on the calendar, to underscore the nature of rare diseases and the challenges patients face.
The worldwide awareness day was established in Europe in 2008 by EURORDIS, the organization representing rare disease patients in Europe, and is now observed in more than 80 nations.
To help support the #1 in10 campaign, NORD has launched the Instagram account, @rarediseasedayUS.
Instagrammers are invited to tag @rarediseasedayUS in their photos and celebrations to share what's happening now for Rare Disease Day. Instagram members are invited to use the official Rare Disease Day hashtags #RDD2015 and #RareDiseaseDay and follow Rare Disease Day on Facebook (/RareDiseaseDay.US) and Twitter (@RareDayUS).
Established in 1983, the National Organization for Rare Disorders (NORD) is the primary nonprofit organization representing all patients and families affected by rare diseases in the U.S. It provides programs of advocacy, education, research and patient/family services to improve the lives of all people living with rare diseases. NORD represents more than 200 disease-specific member organizations and partners with many other organizations in specific causes of importance to the rare disease patient community. Follow NORD at www.rarediseases.org/ and on Twitter at @RareDiseases
In Other Rare Disease Day Awareness:
Shire plc announced its support of Rare Disease Day 2015 by calling for improvements in the journey to diagnosis for those living with a rare disease. Under a new educational initiative, "Diagnosis Doesn't Have to be Rare", Shire is launching a series of educational materials for Rare Disease Day, highlighting the often challenging rare disease diagnosis journey many patients face. The materials aim to help raise awareness of rare diseases, as knowledge and information are critical to early diagnosis and play a major role in empowering patients and their families.
The theme for this year's Rare Disease Day, "Living with a Rare Disease", acknowledges that developing and facilitating access to diagnostics and treatments could change the day-to-day reality for someone with a rare disease.,, Rare Disease Day takes place annually on the last day of February, and is coordinated at the international level by the European Organization for Rare Diseases (EURORDIS) and by National Alliances and Patient Organizations at the national level.
Many people with a rare disease continue to experience low quality of life and high levels of disability. Surveys have shown that it may take several years (on average five years) before patients with a rare disease receive the right diagnosis, with visits to different physicians and possible misdiagnoses along the way.,,
"Rare Disease Day is symbolic in the solidarity it brings to everyone with an interest in helping those with rare diseases," said Emmanuel Dulac, Head of the Rare Diseases Business Unit at Shire. "At Shire, we believe in the importance of raising awareness of the barriers to diagnosis in an effort to improve this challenged pathway, which is why we're launching our educational initiative today. Shire believes the pathway to improve diagnosis can only be achieved by all stakeholders joining together to find solutions to help ensure accurate diagnosis of rare diseases at an early stage."
There is limited public, patient and physician knowledge of the signs and symptoms to look out for, due to the vast number of rare diseases as a whole (approximately 7,000 identified,), and the rarity of those diseases individually. Physicians may only come across some of these rare conditions once (if at all) in the duration of their careers. How long the diagnosis takes often depends on whether a physician has seen the rare disease before.
Rare diseases can often hide behind the symptoms of more common illnesses, which can make diagnosis extremely challenging and often lead to misdiagnosis. Misdiagnosis can force patients to see multiple doctors, take multiple tests and treatments, and lead to unnecessary hospital visits. The longer it takes to receive a diagnosis, the more physicians a patient and their family must see.
Shire is committing to helping raise awareness of rare diseases, including the diagnosis challenges, and implementing initiatives to support an improved diagnosis journey. Shire will continue to introduce these new initiatives under the "Diagnosis Doesn't Have to be Rare" campaign umbrella throughout 2015, with activities in partnership with the rare disease community directly aimed at improving the diagnosis journey.
- Engel PA, et al. Physician and patient perceptions regarding physician training in rare diseases: the need for stronger educational initiatives for physicians. Journal of Rare Disorders 2013: Vol. 1, Issue 2. Available at www.journalofraredisorders.com/pub/IssuePDFs/Engel.pdf Last accessed January 2015.
- Shire. Rare Disease Impact Report: Insights from patients and the medical community. 2013. Available at: www.shire.com/shireplc/dlibrary/documents/RareDiseaseImpactReportforWeb.pdf Last accessed January 2015.
- EURORDIS. The voice of 12,000 patients. Experiences and expectations of rare disease patients on diagnosis and care in Europe. Available at: www.eurordis.org/IMG/pdf/voice_12000_patients/EURORDISCARE_FULLBOOKr.pdf Last accessed January 2015.
- EURORDIS. Theme of the year: Living with a rare disease. Available at: www.rarediseaseday.org/article/theme-of-the-year-living-with-a-rare-disease Last accessed January 2015.
- Global Genes. Rare diseases: facts and statistics. Available at: globalgenes.org/rare-diseases-facts-statistics/ Last accessed January 2015.
To view the diagnosis journey educational materials, and keep up to date on new initiatives, visit: www.Shire.com/RareDiagnosis
The first Rare Disease Day was held on 29 February 2008 in numerous European nations and in Canada through the Canadian Organization for Rare Disorders. In 2009 Rare Disease Day went global as NORD (National Organization for Rare Disorders) mobilized 200 rare disease patient advocacy organizations in the United States while organizations in China, Australia, Taiwan, and Latin America also lead efforts in their respective countries to coordinate activities and promote the day.
List of the Rarest Diseases (Not in Order):
- Fields disease
- Von Hippel-Lindau (VHL)
- Hutchinson-Gilford Progeria
- Paraneoplastic pemphigus (PNP)
- Fibrodysplasia ossificans progressiva (FOP)
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