Staff Report
NEWBERRY Community Hall (1209 Caldwell Street) will light up in blues, pinks, oranges and greens this February for a rare occasion in Newberry observance of Rare Disease Day.
Held annually on the rarest day of the calendar February 28 Rare Disease Day raises awareness and advocates for persons with rare diseases and for their families. This year, due to the COVID-19 pandemic, Rare Disease Day is being observed virtually all around the world as participants “show their stripes” by lighting up buildings in stripes of light. The colors will be on display in Newberry starting Friday, February 26, and will remain through Sunday, February 28, in the evenings. Newberry residents are encouraged to help spread awareness by stopping by Community Hall to take a selfie in front of the lights and share pictures on social media using the hashtags #RareDiseaseDay and #NewberryCaresAboutRare.
Opinion: One in 10 Americans suffers with a rare disease, and half of those are children
Dr. Stephanie Paulmeno
FacebookTwitterEmail
1of3
Dr. Stephanie Paulmeno, DNP, MS, RN, NHA, CPH, CDP, CCM, at her home in Old Greenwich, Connecticut in April 2020.Tyler Sizemore / Hearst Connecticut MediaShow MoreShow Less
2of3
Dr. Stephanie Paulmeno, DNP, MS, RN, NHA, CPH, CDP, CCM, administers a flu shot to Old Greenwich resident David Johnson at the Eastern Greenwich Civic Center in Old Greenwich, Connecticut, Wednesday, Oct. 14, 2020.Tyler Sizemore / Hearst Connecticut MediaShow MoreShow Less
3of3
Imagine you or your child, spouse or parent having serious, often painful and debilitating symptoms that professionals are challenged to accurately diagnose or effectively treat. One feels helpless and hopeless. There are so many rare diseases affecting people this way in this country. Why one might ask, is the issue of rare diseases so important when compared to other more common illnesses
Submit Release February 26, 2021 (PRLEAP.COM) Health NewsNational Rare Disease Awareness Day (RDAD) takes place during the last week of February. This year, the awareness message is even more critical. The pandemic has caused numerous difficulties for rare disease patients, families, and the healthcare community. Major obstacles have included a delay in diagnoses, limited access to treatments, and the lack of clinical trials.
Helping to spread the word on awareness is Greenwich, CT- based, Fibrolamellar Cancer Foundation (FCF), a non-profit organization formed to fund research, build awareness and provide patient support for an aggressive liver cancer that strikes teens and young adults who are typically not diagnosed until the disease is in an advanced stage. FCF was founded in 2009 by 27-year-old Tucker Davis, who lost his life to Fibrolamellar on Rare Disease Day in 2010, after an 18-month fight.
Cytokinetics Joins Global Initiative to Recognize International Rare Disease Day forextv.com - get the latest breaking news, showbiz & celebrity photos, sport news & rumours, viral videos and top stories from forextv.com Daily Mail and Mail on Sunday newspapers.
Feb 26, 2021 10:10am
The Empire State Building will light up again in green, pink, blue and purple to help Rocket Pharma honor Rare Disease Day. (Rocket Pharma)
How does an orphan drug pharma company with offices in the Empire State Building amplify rare disease awareness?
Ask Rocket Pharmaceuticals. The rare disease specialist convinced its famous landmark landlord to turn its outside lights to green, blue, pink and purple for Rare Disease Day.
That was two years ago and the beginning of its “Light Up for Rare” campaign. This year, the top of the Empire State Building will once again be decked out in multicolor stripes, but so will dozens of other famous landmarks in 35 cities around the world.