Patients, Family and Friends to Take Part in Variety of Rare Disease Day Events Worldwide

Scores of events are afoot worldwide to mark Feb. 28, Rare Disease Day 2019. The activities aim to raise awareness about rare diseases and the millions of people — estimates run as high as 350 million — they are thought to impact.

Across countries, patients, caregivers and advocates will paint faces, wear denim ribbons and zebra-like stripes, contact policymakers, flood social media platforms, take part in academic and community discussions, and hold fundraisers — all in the name of roughly 7,000 rare diseases and the 1 in 20 people who ultimately will have one, according to the campaign’s website.

In the United States, a disease is called rare when it affects fewer than 200,000 residents at any given time. Across Europe, the definition is fewer than 1 in 2,000.

Held annually on the last day of February, Rare Disease Day seeks to boost awareness among the general public, as well as lawmakers, public authorities, industry representatives, researchers, and health professionals. This year’s Rare Disease Day slogan is “Show Your Rare, Show You Care.”

Since its start in 2008, the effort is coordinated internationally by Eurordis-Rare Diseases Europe, a patient-driven 70-country alliance of more than 800 patient organizations. What began as a European event has progressively expanded to more than 50 countries; the United States joined in 2009.

The theme of this year’s campaign is “Bridging Health and Social Care.” Aimed at policymakers, healthcare professionals and services, it’s part of a global call for better coordination of all aspects of care for those with diseases that span cystic fibrosis, endometriosis, pulmonary hypertension, scleroderma, and sickle cell — to Angleman syndrome, Batten and Gaucher disease, epidermolysis bullosa, fragile X syndrome, and spinal muscular atrophy.

“For most people living with a rare disease, as well as their family members or carers, the reality of daily life can include any of the following: collecting and taking medicines, attending appointments, participating in physical therapy, using specialist equipment, and accessing various social and community support services,” Eurordis states on its rarediseasday.org website

“Managing these care-related tasks alongside their usual daily activities such as work, school and leisure time can be challenging.”

A Europe-wide Rare Barometer survey on juggling routine care and daily life found 8 in 10 rare disease patients have difficulties completing basic tasks, and most care is coordinated by patients and their family. Seventy percent call the effort time-consuming.

Organizing care can entail researching local services, lining up treatments and rehabilitation, handling administrative procedures, and adapting common home or work spaces. As a consequence, patients often miss work or school.

The process becomes unwieldy and frustrating, often marked by poor communication across service providers, and repetition of information to multiple parties.

The official Rare Disease Day Information Pack  addresses subjects such as event organizing, how to take action locally, and how to tell stories. Go here for 2019 patient video narratives.

The campaign is encouraging a robust social media presence, suggesting hashtags such as #ShowYourRare — used along with face painting — and #RareDiseaseDay. The official campaign is also on Facebook, Twitter and YouTube.

Because the zebra is the official U.S. symbol of rare diseases — its distinctive markings symbolizing both individual uniqueness and community commonality — the use of this year’s new hashtag, #ShowYourStripes, is encouraged when posting photos of individuals or objects wearing stripes. Go here for more ways to participate.

“At NORD, we are very proud to have been the flag bearer of Rare Disease Day in the United States for the past 10 years,” said Peter L. Saltonstall, chief executive officer of of the National Organization for Rare Disorders (NORD) on its webpage.

“Now we are upping the ante with the Show Your Stripes campaign, which has a goal of increasing attention on rare diseases beyond the existing community and spreading it to the world at large.”

The official U.S. sponsor of Rare Disease Day, NORD is promoting a social media toolkit that includes tips on how to get started, graphic design, templates, and suggestions such as using a special Facebook profile picture frame.

It also offers a press kit that includes sample letters to the editor. There’s also the 2019 official poster, logo and fact sheet, and information how to host a medical center event and a panel discussion.

Across the United States, official Rare Disease Day activities include:

• A Yale University School of Medicine lecture titled “Rare Diseases and How to Find Them: A Journey to the Heart of Internal Medicine,” on Feb. 14.
• Mississippi Rare Disease Day 2019 event Feb. 19, in Jackson.
• A Rare Disease Day Virtual Race featuring a 5K, 10K or half marathon  taking place Feb. 1 through Feb. 28, and hosted by Running on Air.
• Rare Disease Family Night on Feb. 13, and Annual Rare Disease Conference on Feb. 25, both in Paterson, New Jersey.
• Perthes Kids Art Contest running through Feb. 28 in Santa Monica, California.
• World Rare Disease Day Rally on Feb. 23, Charlotte, North Carolina.
• See Rare Run Virtual 5K Run/Walk to provide financial assistance to rare-disease patients, Feb. 22-28.
• Rare Disease Day Houston on Feb. 23.
• Rare Disease Week on Capitol Hill on Feb. 24-28
• 5th Annual Nemours Rare Disease Day student research event, in Wilmington, Delaware on Feb. 25-28.
• A meeting called Connecting Patients and Researchers on Feb. 27 in Ann Arbor, Michigan.
• A session titled Clinical Trials 101, on Feb. 27, either live in Lincoln, Delaware, or online.
• Rare Disease Day celebrations on Feb. 28 in Wilmington, Delaware.
• Rare Disease Day 2019  at Helen DeVos Children’s Hospital in Grand Rapids, Michigan, on Feb. 28.
• The 10th Annual Conference on Advancing Rare Disease Research, Therapy and Patient Advocacy, March 1-2, Notre Dame, Indiana.
• San Jose, California’s First Annual Walk for Rare Diseases on March 2.

Go here to submit a U.S. event.

In listings elsewhere, the National Institutes of Health (NIH) will mark Rare Disease Day with an all-day event in Bethesda, Maryland, featuring interactive panel discussions on research models for rare diseases.

A policy roundtable discussion will take place at the United Nations headquarters in New York City on Feb. 21. Sponsored by Eurordis, the event brings together 100 participants from the NGO Committee for Rare Diseases, U.N. agencies, academic and research institutions, the private sector and others to advance rare diseases as a global public health priority. The event may be joined online.

Global Genes, a California-based organization that seeks to connect, empower and inspire the rare disease community, suggests downloading and printing the #CareAboutRare sign for social media use. It also asks participants to take selfies and tag them with #CareAboutRare and #WRDD2019.

Global Genes also suggests that patients join its rare portal, check out its international events hub, and wear the blue denim genes ribbon — a global symbol of hope for rare disease communities — to show support and raise awareness.

There’s no shortage of events elsewhere, either.

In Thunder Bay, Ontario, Canada, for example, the Canadian Fabry Association will host a Rare Disease Day awareness campaign.

In the United Kingdom, happenings include the annual Westminster Rare Disease Day Reception on Feb. 27 in London, while Brussels will host the Third Eurordis Multi-Stakeholder Symposium on Improving Patients’ Access to Rare Disease Therapies on Feb. 13–14. The 5th Slovenian National Conference on Rare Diseases is set for Feb. 28 in Kranj, Slovenia.

In Nairobi, Kenya, the Chronic and Rare Disease Foundation will host a face painting event on Feb. 28.

And the Rare Disease Day Fun Run and Walk will take place Feb. 24 in Cairns, Australia.

A list of worldwide events, by country, can be viewed here.

”There’s is no cure for the majority of rare diseases, and many go undiagnosed,” an event webpage states. “Rare Disease Day improves knowledge amongst the general public of rare diseases, while encouraging researchers and decision makers to address the needs of those living with rare diseases.”