10 Ways to 'Defy Rare' on Rare Disease Day's 10th Anniversary
Rare Disease Day, on Tuesday, February 28, 2017, is fast approaching!
This is the one day each year that rare disease is recognized. Rare Disease Day is organized by Eurordis, Rare Diseases Europe, and includes partners celebrating from all over the world. This is the 10th year the event. Rare Disease Day activities occur throughout February and March.
This year’s theme is Research. “With research, possibilities are limitless.”
Rare Disease Day is a day of unity where rare disease patients, families, friends and organizations come together to defy rare disease.
This is our day. As a patient, I’ve been advocating for Klippel-Feil syndrome for many years. By taking part in Rare Disease Day, our most important messages will be heard by researchers, physicians, Congress, the public at large, and our peers.
Action is key! I’m sharing 10 ways that you can be involved, for our 10-year anniversary!
OK fine, maybe 28 ways. We are encouraged and invited to participate! Click on the highlighted words (embedded links) below, which will bring you to websites, events, tools, and information, to make your planning easy.
1. Visit the official Rare Disease Day website. I’m focusing on the US here, but this is a global day. You will be empowered when you see the impact of events planned all over the world that you can participate in. The National Organization of Rare Disorders (NORD) is the official US sponsor of Rare Disease Day. NORD hosts the Proclamations Project with a goal to obtain Rare Disease Day proclamations in each state to mark official awareness across the country. Individuals can also request proclamations in their local municipalities. NORD offers support and guidance for taking those actions.
2. Rare Disease Day U.S. has advocacy events listed on their website, per state. Nearly every state has events planned this year for you. Also, check out their “Handprints Across America” campaign. Rare Disease Day US is looking for those interested in attending a State House Event in each state. Click here for more information.
2. Use your voice on Capitol Hill. Rare Disease Legislative Advocates(RDLA) offers a powerful week of events that take place in Washington, DC, beginning Monday, February 27, at the National Institutes of Health (NIH). Throughout the week, attend and share your rare issues, needs and concerns about rare disease — directly to members of Congress. To learn more, click here. Travel tips included. This is an ideal, and rare opportunity to meet others in our rare community. Attendance of RDLA events is free.
3. Join Sanford CoRDS Research on Friday, February 24 at their annual Sanford Rare Disease Symposium in Sioux Falls, South Dakota. The goal of the Sanford Rare Disease Symposium is to raise public awareness of the importance of rare disease research and provide information to scientists and healthcare providers. To learn more, click here.
4. Check out Global Genes, Allies in Rare Disease. Global Genes participates actively in Rare Disease Day and offers materials for your use. You can “Wear That You Care“ with your own pair of jeans and denim blue genes ribbons. Wear Global Genes rare disease activist apparel, such as T-shirts and jerseys, on Tuesday, February 28 and throughout the week! This is a great way to spark the conversation. Tell others why you care about rare disease.
5. Research is key! Many patient organizations, such as Klippel-Feil Syndrome Freedom, support Rare Disease Day events. Remember, this year’s focus is research. In fact, the skeleton key is the symbol of hope and freedom, for Klippel-Feil syndrome (KFS) – to open doors for a rare skeletal disease! We encourage our community to wear skeleton keys on necklaces, bracelets, key chains, and hand out skeleton keys to represent the need for research, treatments, and awareness for KFS. Whatever your rare disease symbol or ribbon may be, at KFS Freedom we say, “Wear one, share one!” Many patient organizations offer fact sheets about your specific rare condition. Share this information at your doctor, hospital, work, community, neighborhoods, church, library, schools, and recreation centers.
Education is key! NORD is working with students and staff at medical schools, universities and teaching hospitals to organize Rare Disease Day events. Speakers from NORD’s Patient/Caregiver Speakers Bureau will share their experiences and has put together resources and a curriculum supplement for teachers to use. There are resources for high schools for elementary and middle schools, universities and medical schools. Be bold!
6. Maximize the power of social media! For up-to-the-minute information, stay connected! Rare Disease Day has several social media outlets. Use Facebook – like, share, post!
Twitter is a remarkable powerhouse —you can tweet to physicians, doctors, hospitals, clinicians, genetics, researchers, med students, members of Congress, etc. Tweet and retweet!
Here are a few Twitter handles; click and follow to get started: Eurordis, Rare Disease Day, National Organization for Rare Disorders, Rare Disease Day US, Global Genes, Rare Disease Legislative Advocates, Sanford CoRDS, Klippel-Feil Syndrome Freedom, and The Mighty.
Instagram, Snapchat, Google+, YouTube, and Vimeo are also perfect outlets. Use these hashtags on all social media to reach a wide audience and connect with others. #RareDiseaseDay #WRDD2017 #RareDC2017 #DefyRARE
7. Contact your local media. Spread the word about Rare Disease Day, the rare disease you face, and your needs. Share your message! Write a story for your local newspapers, contact your local TV news stations and radio stations about a story, and write for The Mighty.
NORD offers a press kit and resources to help individuals reach out to their local media or share their stories online. These include sample press releases and a sample Letter to the Editor.
9. Using the ideas above, you can create your own event in your area. Invite your family, friends, even physicians and state legislatures, to participate with you. No event is too big or too small. Global Genes offers additional materials to help. Do what works for you. We had a guy in Canada who did a “Bowling for Rare” event! There are free resources and fact sheets that you can download to support your event. Be sure to coordinate your event your specific rare disease organization to elevate your efforts and reach a wider audience.
10. While attending and participating in person is ideal, perhaps an event is not near you, or your chronic rare illness may make travel difficult. You and your rare disease advocacy still matters and makes an impact. If you can’t make it to an event, Rare Disease Legislative Advocates welcomes you to share your rare disease story, your specific needs and policy priorities. They will hand-deliver your letter to your elective officials for you. Click here to tell Congress what matters to you
11. Remember, your laptop, tablet, cell and photos are powerful vehicles. Plug in! Participate live via live streams, from the comfort of your own home. Sanford CoRDS will live stream their Rare Disease Day Symposium presentations on Friday, February 24 via Skype for Business. Click here to join the live stream throughout the day.
Rare Disease Legislative Advocates will also live stream several of their events on Capitol Hill, click here for information.
Let’s defy rare together! Make the unknown known in 2017!
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Sharon Rose is an interior designer in the Chicagoland area and patient advocate who aims to defy rare disease. Nine years ago, at age 38 she was diagnosed with Klippel-Feil Syndrome after a lifetime of health related issues. She was then diagnosed with Ehlers-Danlos Syndrome, Cervical Dystonia and previously Vasculitis. She advocates actively for much needed treatments and understanding of Rare Diseases. She founded Klippel-Feil Syndrome Freedom. Her motto: Be a change-maker.
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