This year’s global Rare Disease Day, on February 28, focuses on the challenges patients and their caregivers face on a daily basis in a bid to improve the services on which they depend.
For the last decade, companies and organizations across the US have worked together to find creative and inspiring ways to be part of the Rare Disease Day awareness campaign.
We talked to the team from the National Organization for Rare Disorders (NORD) about the #ShowYourStripes campaign, the growth of rare disease awareness and the importance of both global and local collaboration.
What has NORD planned for Rare Disease Day 2019 and how can people get involved?
This year, to celebrate the 10th anniversary of Rare Disease Day in the US, NORD launched an awareness campaign with a call to action centering on three simple words: Show Your Stripes. The idea is to raise rare disease awareness through creative, collaborative and fun activities that capture the public’s attention leading up to and on February 28.
The zebra is the symbol of rare diseases in the US and is noted for its distinctive black and white stripes. Every one of us has our own stripes, characteristics that make each of us special. Just as zebras are unique, so are the members of our community. The Show Your Stripes campaign asks the general public to show support and solidarity for the millions of people affected by rare diseases, which can be done in a variety of ways.
The simplest way to show your stripes is by posting a photo of yourself wearing stripes in support of the rare disease community on, or in the days surrounding, Rare Disease Day on social media. Use the hashtags #ShowYourStripes and #RareDiseaseDay, add a brief explanation and challenge others to do the same.
Companies and organizations can participate by collaborating on a major striping concept for Rare Disease Day. Wrapping a car or bus in stripes, draping a workplace lobby in striped banners, lighting up the exterior of a building with stripes, striping their website or challenging every staffer to wear stripes are some examples of larger scale Show Your Stripes efforts.
Tell us about this year’s Rare Disease Day theme of bridging health and social care?
The global theme was chosen to highlight the daily challenges faced by patients and their caregivers in everyday life. Rare diseases represent a significant burden on the people who live with them, as well as their families and caregivers.
The list of vital tasks that must be carried out on a daily basis is long and can often be overwhelming. Insurance issues and accessing social services, daily medications and medical appointments all have to be managed on top of work, school, family obligations and more.
By raising awareness about these common hurdles and the impact they have on patients and caregivers, we hope to be able to improve the services that help families in need.
How does NORD work with other organizations to make Rare Disease Day a reality?
NORD is the official sponsor of Rare Disease Day in the US, alongside our sister organization the European Organization for Rare Disorders (EURORDIS), which organizes the international campaign.
We work with the global Council of National Alliances, which is a diverse team of patient group leaders from around the world. The council develops and refines the campaign themes, calls to action and visual elements. This collaboration ensures that we address issues that are common for both developed and developing nations and that translation does not become a barrier to engagement.
On the ground in the US, members of NORD’s Rare Action Network coordinate advocacy events at their state capitols and in local communities on or around the last day of February. The network is made up of individuals and organizations that NORD provides with the tools, training and resources to be powerful advocates throughout the year.
NORD’s policy team also partners with other national advocacy groups and coalitions on a variety of issues of concern to the rare disease community on the federal level.
How has Rare Disease Day changed since its inception 12 years ago globally, and 10 years ago in the US?
Rare Disease Day has grown from an awareness day observed by 18 countries in Europe to a truly global campaign celebrated in more than 90 countries.
We have seen interest grow tremendously in the US. What started out as a small campaign marked by only a handful of states has turned into one that is consistently met with interest from legislators, regulators, media, companies, organizations and patient communities nationwide.
One of the most significant changes over the past decade has been the level of preparation and planning that all participating organizations put into Rare Disease Day.
More suggestions on how to participate in the Show Your Stripes campaign, plus downloadable promotional materials, social media tool kits and communications templates can be found on the NORD website.
Thanks go to the staff at NORD for their help providing responses to these questions, including Lisa Sarfaty, Director of Strategic Planning & Project Development, Kristen Angell, Associate Director of Advocacy, and Laura Mullen, Associate Director of Communications & PR.