Millions participated in this year’s World Rare Disease Day–so many, in fact, that we had to do a THIRD compilation post to show all of your rare spirit! At Global Genes, we love to see the rare community come together for a great cause–and come together you did! We’re proud to bring you a few stories of how the day was spent around the world. Stay tuned to The RARE Daily in the coming weeks to see even more recaps.
A video was made in India for this year’s World Rare Disease Day:
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Peggy Dicapua from Metro NY/NJ’s chapter of Batten Disease Support and Research Association was involved in the Run for Rare, Run Across America project.
“Attended the send off for Noah Coughlan’s 3rd run across America, the Run for Rare 2015. Noah set off on Rare Disease Day, Feb. 28, 2015, from Liberty State Park in New Jersey to begin the 3100 mile run across America to raise awareness for all Rare Diseases. This is Noah’s 3rd time running across America. The first 2 runs were dedicated to Batten Disease. Recognizing that 30 million people suffer from many rare diseases Noah decided to run yet one more time to bring awareness to all diseases”
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Brandon Bosma spoke at this year’s TEDxYouth: Redefining Normal on behalf of the Trisomy 18 community.
“I was able to speak at TEDx Youth Edmonton on the theme of Redefining Normal. I spoke about Trisomy 18 – what it is, how it affects me. It is difficult for many Trisomy children to receive equal medical treatment. I shared stories of many other Trisomy children and also recommendations. I felt it was very successful because the feedback was very positive. Most people had never heard about Trisomy 18 before. I was asked to speak at a Junior High Social Justice Conference on March 12th. A doctor who heard the live -stream totally agreed with me and hates what is happening to Trisomy children.”
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Emily Webb participated in this year’s World Rare Disease Day through the HelpHOPELive International Rare Disease Day Blog Post.
“Fundraising support nonprofit HelpHOPELive wrote about one of our fundraisers, Alma Claussen, a beautiful baby girl with biliary atresia. The blog post helped to spread awareness of Alma’s campaign, Rare Disease Day, and biliary atresia, including information about Alma and her family’s journey as well as general statistics about Rare Disease Day.”
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SuperCuts Celebrates World Rare Disease Day!
“This was the second annual Supercuts supports Rare Disease day. Over 100 salons across Massachusetts and New Hampshire all wore denim and decorated with blue balloons and ribbons. And a portion of our sales were donated to help find cures.”
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| Saint Peter’s University Hospital Celebrates Rare Disease Day |
The Department of Genetics sponsored an all day celebration with information booths, speakers, raffle prizes and light refreshments.
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A Night With the New Jersey Devils
“CureCADASIL Fundraising Event. CureCADASIL was the Community Assist organization for this hockey game against the Arizona Coyotes. We had an information table on the main concourse, a 30 second Public Service Announcement on the jumbo screen, and shared in the 50/50 drawing. It was very successful and a lot of fun! We really didn’t have a goal but raised about $4,000.00 for CADASIL research.”
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Joy Abella participated this year in Supporting #CareAboutRare
“Just a small event, here in our office, mainly to support our clients, Premier Research, in their Care About Rare Day activities. Employees dressed up in jeans, and we posted it on Twitter.”
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Premier Research Employees Supporting Rare Disease Day with Global Genes’ #CareAboutRare
“All of our employees worldwide were asked to wear their favorite jeans to work as well as the Global Genes Blue Denim Genes Ribbon and gather together to show support for and raise awareness for rare disease in honor of Rare Disease Day 2015. We participated in the #CareAboutRare campaign on social media, sharing our office pictures, as well as engaging with the Rare Disease community at large.
Our activities reminded the community about the importance of awareness leading to education and research, and our employees were reminded that the work they do is important, and has a great impact.”
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DUSA Rare Disease Day
“It was great,” said Kristin Keller. “We promoted awareness of the day in our offices and via social media; encouraged all employees to wear jeans; raised over $500 for Global Genes and issued press release.”
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Jennifer Vargas participated in Wear That You Care- The Jeans for Genes Campaign
“I consider the event successful because I was able to reach out to a group of people, my coworkers and inform them about the rise of rare diseases. Some people were very open and interested in hearing what I had to share about rare diseases and our personal experience with my son. I was able spread awareness about rare diseases and emphasize the need for treatments and cures through donations.
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The Proyecto Pide un Deseo Mexico participated through the Day by Day, Hand to Hand in Alliance with ISSSTE in Mexico
“It was a success: the FEMEXER (Mexican Federation for Rare Diseases) invited many patients’ associations, as well as medical doctors, some federal deputies, media reporters, an actress, some medical investigators, and many frieds attended a whole week of celebrations. From Feb 23th to Feb 26th we held four events with ISSSTE, House of Deputies, and Seguro Popular.”
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Britanie Arnold celebrated with an event: Hope for Kenny!
“My family and I helped raise awareness on rare disease day by sharing my son Kenny’s story, and facts about those living with rare disease, as well as printed out flyers to hand out! I considered it a success, and want to continue raising awareness for my son, and others going through similar issues.
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