Mar. 5, 2018
TOPIC: Get Involved
Posted by Jennifer Huron
2018 is a big year for the rare disease community – NORD is celebrating its 35th anniversary. For the past 35 years, NORD has taken pride in being the rare disease community’s biggest advocate. Our policy, research and other efforts have played a significant role over the years, advocating for what matters most and making sure patients have a voice. In this special anniversary blog series, we are highlighting our decades of service to those impacted by rare diseases.
Throughout the year, we’ll be telling our story… and we hope you will consider telling yours. Do you have a story you would like to share about how NORD has helped and what NORD means to you? Tell us – send us a note using this page on our website: https://rarediseases.org/shareyourstory/. Your story may be chosen to appear on our website or as part of our special anniversary celebration.
This May, the National Organization for Rare Disorders (NORD) will turn 35. This nonprofit organization is the leading advocate for patients with rare diseases. There are 30 million Americans with rare diseases—one-tenth of the population—making it an issue that touches nearly every U.S. household in one way or another. Here are 35 interesting ways to get involved to celebrate the anniversary.
Learn about the early days
- Watch the two episodes of “Quincy M.E.,” that helped to put rare diseases in the national spotlight (“Seldom Silent, Never Heard”; “Give Me Your Weak”). These episodes of the 1980s hit television show showed the plight of rare disease patients and the need for incentives to encourage the development of therapies for small patient populations. In one pivotal scene, 500 extras – all real rare disease patients and their caregivers organized by NORD (several of whom went on to incorporate and form NORD) – staged a march to demand support for a real-life bill that was the topic of the episode. The bill was signed into law as the Orphan Drug Act of 1983, viewed as one of the most successful pieces of legislation ever passed for helping millions of people receive medical treatments that otherwise might not exist.
- Actor Jack Klugman, star of Quincy M.E., is credited with having played an instrumental role in passing the Orphan Drug Act. How did this come to be? After reading an article about rare diseases in the Los Angeles Times in the early 1980s, Jack’s brother, Maurice Klugman, a Hollywood writer and producer who suffered from a rare cancer, wrote the two episodes of “Quincy M.E.”
- Read the original Orphan Drug Act, which stipulates that “it is in the public interest to provide such changes and incentives for the development of orphan drugs.” Prior to it being signed into law, very little was being done to study these diseases or develop treatments.
- Read President Reagan’s remarks upon signing the Orphan Drug Act into law.
- Read The Waxman Report, written by former Congressman Henry Waxman, for a behind-the-scenes look at how the legislative process works. Representative Waxman served for 35 years in the House of Representatives and he provided particular leadership in helping to pass the Orphan Drug Act.
- Learn why the Orphan Drug Act is still relevant today. Only 10 of the products brought to market by the pharmaceutical industry in the decade before 1983 would have qualified under today’s Orphan Drug Act as orphan drugs. Today, one-third of all new treatments approved are to treat rare diseases. Yet there is more work to be done, as nearly 95% of the 7,000 rare diseases still have no treatment.
Get to know us
- View our timeline that highlights NORD’s work and impact over the years.
- Say hello! Our team is made up of passionate and dedicated advocates, many of whom are personally affected by rare diseases.
Understand the issues
- Visit our Policy Issues page to understand the range of issues facing the rare disease community – from advancing basic and translational research to advocacy.
- Learn how your state measures up in helping rare disease patients, thanks to NORD’s Rare Action Network State Report Card, which grades each state on key policy areas. You can also download and read the full report.
- Join the celebration! NORD will host its 35th Anniversary Celebration presenting the Rare Impact Awards on May 17 at the Andrew Mellon Auditorium in Washington, D.C. The event will highlight more than three decades of work to fulfill NORD’s mission and talk about opportunities for future progress.
- Plan to attend NORD’s annual Rare Diseases & Orphan Products Breakthrough Summit, scheduled for Oct. 15-16, in Washington, D.C. This annual event is the largest multi-stakeholder event in rare diseases, historically featuring 20+ speakers from FDA and 80+ thought leaders from the patient community and industry. The event also offers meaningful patient participation and an expansive poster session highlighting the brightest minds in rare disease research, innovation, awareness, and education.
- See what rare events are happening in your state and connect with others who care about rare diseases.
Learn about rare diseases
- Read any of the more than 1,200 reports in NORD’s online Rare Disease Database. Reports are updated and added all the time with the help of our Member Organizations and independent medical experts.
- Get the Facts! Did you know that there are 7,000 rare diseases, and more than half of people with rare diseases are children? NORD’s Rare Disease Fact Sheet provides the need-to-know information on rare diseases as a whole. Download and print this fact sheet to help us spread the word about rare diseases and how they affect our communities.
- Be part of the change – join the Rare Action Network, the nation’s leading rare disease advocacy network working to improve the lives of the 30 million Americans impacted by rare disease. Interested in taking on a larger role? You can also volunteer to become the State Ambassador for your state. Patient organizations can also apply to become a NORD Member Organization. Together, we are strong.
- Create social awareness by using the hashtag #RareDiseases and connecting with NORD on Facebook and Twitter.
- Share your story here or here.
- Join Running for Rare, NORD’s inspiring charity marathon team, as either a runner or Rare Community Partner. We take on some of the biggest races in the world, including the Boston and New York City marathons, while helping to raise awareness and funds to help rare disease patients.
- Attend or host an advocacy event to raise awareness at the state level. Many issues of importance to the rare disease community are debated and decided at the state level.
- Meet with your legislator and explain what issues matter to the rare disease community.
- Host an awareness event. This is a crucial step in the process to initiate change. Together, we can bring attention to the cause, connect advocates, and work together as a network to effectively advocate for legislation. Eventually, our result will be to make rare diseases a common household discussion across the U.S., which can lead to better policies, funding, and research for rare diseases. (Check out some tips for hosting a successful awareness event.)
- Browse our educational resources for advocates, which provide core advocacy principals and techniques that can help individuals and organizations.
- Get inspired and watch this PSA from the rare disease community.
- Start a research fund, donate to an existing research fund, and learn about NORD’s research program.
- Volunteer and donate your time to make an difference for the rare disease community.
- Employment opportunities: at NORD, you can make a difference.
- Donate – As a 501(c)(3) organization, your donation to NORD is tax deductible. Your gift means so much to so many, and we thank you!
- Start a student club or sign up for NORD’s Student Membership to receive resources that will help promote rare disease education and awareness.
Watch and learn
- See how one community came together to give a local boy living with a rare disease the surprise of a lifetime by watching our documentary.
- Join us for NORD‘s free webinar series where we address issues of importance to the rare disease community.
- Peruse our online video library for inspiring speeches, informational guides, and other share worthy clips.
- Wear your pride and shop NORD gear.
- Have some fun while learning about rare diseases by downloading some of these puzzles and quizzes.
- Sign up to receive important emails and updates from NORD, such as our monthly e-newsletter, research news, and advocacy alerts.