February 29th is Rare Disease Day. Rare Disease Awareness uses both a denim ribbon and a zebra ribbon for awareness. The denim ribbon is used as a reference to genetic causes or “genes” / “jeans”. The zebra ribbon is a refers to a medical expression, “When you hear hoofbeats, think horses not zebras” in looking for a common diagnosis (horse) over a rare one (zebra). Rare Disease Day® takes place worldwide, typically on or near the last day of February each year, to raise awareness among policymakers and the public about rare diseases and their impact on patients’ lives.
Tissue donation and organ transplant awareness uses a green awareness ribbon for its cause. Art features the green awareness ribbon art meaning to show support for tissues donation and organ transplantation including green awareness angels. Make custom awareness gifts and merchandise such as t-shirts, magnets, ornaments and buttons or pins for yourself or as a gift for a loved one. Add your own words or images to create special awareness ribbon gifts.
January: Blood Donor Month highlights the importance of donating blood.
February 14th: National Donor Day is focused on five points of life: organs, tissues, marrow, platelets, and blood.
April: National Donate Life Month brings awareness to saving lives through organ, eye, tissue, marrow, and blood donors and to encourage more donors. This involves special awareness events and donor recognition ceremonies to promote donation awareness and registration with organ procurement organizations, transplant centers, national donation organizations and other organizations.
Last Week of April: National Pediatric Transplant Week offers donation and transplantation organizations the platform to talk about ending the pediatric waiting list, to engage clinical partners to share their innovative work and patient stories (candidates and recipients), and to honor donor families whose children have saved and healed lives through organ, eye, and tissue donation.
July (2nd – 3rd Weeks): Donate Life ECHO (Every Community Has Opportunity) is a 2-week observance focuses on reaching multicultural communities by sharing personal organ, eye, and tissue donor registration stories. It encourages registered donors to ask members of their personal networks and extended communities to register as donors.
August (1st Week): National Minority Donor Awareness Week brings awareness to minority communities for donation and transplantations. Outreach includes encouraging donor registration, promoting healthy living and disease prevention to decrease the need for transplantation.
November: National Marrow Awareness Month focuses on recruiting donors for bone marrow, blood stem cell, and umbilical cord blood and to increase patient awareness around unrelated transplantation.
November: National Donor Sabbath focuses on the critical need for organs, tissues, marrow, and blood, and their life-enhancing capabilities. It occurs on Friday through Sunday, two weekends before Thanksgiving as a 3-day celebration of life. Faith communities and donation professionals lead discussions of issues concerning donation, including awareness activities, donor registrations, and speakers.
Here are additional websites for learning more about this cause:
Rare disease uses a denim ribbon or zebra stripes ribbon for its cause awareness. The jean denim ribbon is a reference that rare disease is often in the “genes”. The zebra stripe is a reference to the medical expression, “when you hear hoof beats think horses not zebras” in looking for a common diagnosis versus the rare disease.
Rare Disease Day was established to raise awareness with the public about rare diseases, the challenges encountered by those affected, the importance of research to develop diagnostics and treatments, and the impact of these diseases on patients’ lives. The focus of Rare Disease Day 2010 was ‘Patients and Researchers, Partners for Life!’ and is aligned with ORDR’s philosophy that researchers need to work closely with patients and patient advocacy groups to maximize chances for success. This philosophy has been put into practice in our very successful Rare Diseases Clinical Research Network.
There are about 7000 rare diseases identified in the United States. About 80 percent of rare diseases are genetic in origin and it is estimated that about half of all rare diseases affect children. Rare diseases can be chronic, progressive, debilitating, disabling, severe and life-threatening. Information is often scarce and research is usually insufficient. People affected face challenges such as delays in obtaining a diagnosis, misdiagnosis, psychological burden and lack of support services for the patient and family. The goals remain for rare disease patients to obtain the highest attainable standard of health and to be provided the resources required to overcome common obstacles in their lives.
Rare Disease Day is celebrated around the world to raise awareness among decision-makers as well as the general public regarding rare diseases and their impact on patients’ lives. The NIH celebrates Rare Disease Day to:
Demonstrate and reiterate the NIH commitment to rare diseases research to help patients
Highlight rare diseases research, and the development of diagnostics and treatments, being funded and conducted across NIH
Initiate a mutually beneficial dialogue among public and private researchers, patients, patient advocates and policy makers
Exchange the latest rare diseases information with stakeholders to advance research and therapeutic efforts
Put a face on rare diseases by sharing stories of patients, their families and their communities
The first Rare Disease Day sponsored by EURORDIS was held in Europe on February 29, 2008. February 29th was chosen since it is a rare day and it is symbolic of rare diseases. 2009 was the first time that Rare Disease Day was observed in the U.S. In addition to 17 European countries participating in Rare Disease Day 2009, the United States was joined by Argentina, Australia, Canada, China, Colombia, and Taiwan in celebrating the first global Rare Disease Day.
Zebra Stripes Awareness Ribbon Angel Art Painting for Rare DiseaseThe above information was from NIH Rare Diseases website. Learn more at http://rarediseases.info.nih.gov/news-and-events/pages/28/rare-disease-day