By Lisa Phelps, NORD Director of Marketing & Community Relations
With every New Year comes the resolve of individuals to better themselves in one or more ways. But after the ball has dropped and the confetti is swept away, it’s difficult for 75% of people to remain committed to their resolutions beyond the first week!
This year, consider a resolution to which you can remain committed: Resolve to better the lives (and chance at life) for 30 million individuals – not just one.
Rare Disease Day is only eight weeks after New Year’s Day, falling on February 28, 2015. On this one-of-a-kind day, communities around the world will gather together to raise awareness among the general public and decision-makers about the 7,000+ rare diseases and their impact on the lives of patients. Started by EURORDIS and brought to the US by NORD in 2009, this pivotal day has contributed to national plans and policies to better the lives of patients in over 80 countries.
The New Year’s Resolution: Become a Rare Disease Day Partner and join the 30 million Americans impacted by a rare disease to help patients, caregivers, and organizations working to advance the availability and delivery of information, research, education, treatment and care.
1. You Can Donate to support events and activities by patients and advocates
2. You Can Help Host a State House Event, or join one already in planning
3. You Can Share the Rare Disease Day Message with friends and decision-makers through social media, media/press, or in writing to your elected official
4. You Can Submit a Handprints Across America™ photo – using either your photo, or, if you’re feeling ambitious, find influential public figures to take a photo with the Handprints Across America™ handout! The most influential photo will be included in NORD’s 2015 media campaign with a story on the individual or group that submitted.
Let’s Achieve Our New Year’s Goals Together.
“Alone We Are Rare. Together We Are Strong.”™
As the mother of a young daughter with a rare condition, Sarah Y. was faced with feelings of isolation, fear, and hopelessness. Like most parents of children with rare diseases, Sarah felt unsure of where to find support and how to connect with others who would understand the multitude of issues and emotions that rare diseases can bring to light. NORD connects patients and patient advocates every day through programs like RareConnect™ and our regional patient meetings. read more >
Rare Disease Day organizers from around the world made “Rare Disorders Without Borders” the slogan for 2013. I see in it a potent reminder that rare disorders exist everywhere in the world, and I see in it a challenge to ensure that geographic borders don’t bar access to research initiatives, therapeutic options, and support services. read more >
RareDisease Dialog is the official blog for the National Organization for Rare Disorders (NORD). NORD’s staff and friends will share information of interest to the entire rare disease community.
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