There are events taking place in individual states across the United States, but there are also plenty of events that are taking place that everyone across the country can participate in! Here you will find a listing of virtual events for Rare Disease Day.
NORD and ABC News TweetChat
February 28, 2017
1:00 p.m. – 2:00 p.m. EST
More details here.
In celebration of Rare Disease Day®, NORD will co-host a tweetchat on the topic of rare diseases with Dr. Richard Besser, Chief of the ABC News Medical/Health Unit.
We are pleased to present this year’s chat in collaboration with Medscape, the leading online destination for physicians and healthcare professionals worldwide.
Join us! The tweetchat is an opportunity for patients, experts, doctors, the rare disease community and public to come together on Rare Disease Day, ask questions, get answers, and raise important awareness.
NORD will be live-tweeting from @RareDiseases and @RareDayUS (a Twitter feed dedicated to Rare Disease Day) with Marsha Lanes, MS, CGC, NORD’s Genetic Counselor & Medical Editor, answering your questions. Dr. Besser will join and moderate the chat from @abcdrbchat. Medscape will join from @Medscape.
We look forward to having you participate as we work together to bring widespread recognition to rare diseases and the 30 million Americans who battle them.
NIH Rare Disease Day Twitter Chat
February 21, 2017
1:00 p.m. – 2:00 p.m. EST
As part of promotional efforts for Rare Disease Day at NIH NIH will host a Twitter Chat on rare diseases. The chat will feature NIH Director Francis S. Collins, M.D., Ph.D., NCATS Director Christopher P. Austin, M.D., NCATS Office of Rare Diseases Research Director Petra Kaufmann, M.D., M.Sc., and others.
Twitter Chat: #PATIENTDRIVEN® Rare Disease Research
February 15, 2017
7:00 p.m. – 8:00 p.m. EST
More details here.
Join MassBio to discuss patient involvement in rare disease research, new regulations and technologies that are affecting research, how to raise awareness and more during our #PATIENTDRIVEN Twitter Chat in advance of Rare Disease Day! Rare Disease Day, held the last day of February, raises awareness about rare diseases and their impact on patients’ lives. There are approximately 7,000 types of rare diseases and disorders that affect nearly 30 million Americans and countless others around the world.
Join the conversation using #PATIENTDRIVEN!
Share Your "Rare Disease Story" on ChronicallyAwesome.org
Between now and February 27th, The Chronically Awesome Foundation is accepting creative submissions that represent your “Rare Disease Story”. This event is one of many nationwide events that are a part of Rare Disease Day. On Rare Disease Day your story will be published, your story will be read or seen or heard. You will make a difference, the possibilities are limitless!
We will accept:
- Short Stories
- Videos (Embed links to YouTube)
- Photographs or Collages
- Images of creative work: paintings, sculpture, etc.
- Music (email to discuss submission)
Email your work to email@example.com
We look forward to reading and publishing your “Rare Disease Story” on February 28th. Sharing your story with the entire Chronically Awesome Community as well as lawmakers, policy makers, research and industry stakeholders will begin on Rare Disease Day and continue beyond that date.
While we celebrate the efforts of patients on Rare Disease Day and shine a light on the illnesses that are often in the dark, the work does not end on March 1st. Your posts will remain on ChronicallyAwesome.org after Rare Disease Day.
Pledge Your Distance
This International Rare Disease Day, Tuesday, February 28, join Sanofi Genzyme in raising awareness and pledge to run or walk in support of the rare disease community.
How to participate:
- Submit the form below, making a public pledge to run or walk on Rare Disease Day. The number of miles you commit to and how you log the miles is up to you! Go alone or with a group, in the morning or at night, outside or on the treadmill. Walk your kids to school, take your dog on a longer route, or run home from work.
- Spread the word and get others to pledge. Share on social media using #Pledge4Rare.
- On Tuesday, February 28, log those miles!
- Take a photo and share why you’re supporting the rare disease community. Post it on social media tagging @SanofiGenzyme and #Pledge4Rare.
Rare Disease Awareness Book and Toy Drive
I am hosting a toy, book and pajama drive for children who often have multiple or extended hospital stays due to rare disease. The event will be held the entire month of February and then we will deliver all items to Banner Diamond Children’s Hospital in Tucson, AZ. My daughter has recently been diagnosed with Glycogen Storage Disease and Hyperketotic Hypoglycemia. We want to give back and make other children in the hospital feel just as special and loved as my daughter did while she was in her most recent hospital stay.
2017 Every Body Counts!
MDF is excited to participate in 2017 Rare Disease Day, an annual event that takes place on the last day of February to raise awareness of rare disease cases among policy makers, the scientific community and the general public. MDF will roll out the 2017 Every Body Counts! campaign in February for Rare Disease Day this year. Every Body Counts! will help get MDF more involved in clinical studies and trials by sharing community stories for a full understating of research and trial opportunities. There is something for everyone!
Rare Disease Day takes place every year on the last day of February—the rarest date on the calendar—to underscore the unique nature of rare diseases and what people living with rare diseases face. MDF will join hundreds of patient organizations worldwide in celebrating Rare Disease Day. (The theme for the 2017 Rare Disease Day will focus on research.)
Community participation in research studies and clinical trials is critical to finding therapies for myotonic dystrophy. To thank you for getting engaged, the first 10 DM patients who sign up for new research opportunities will win monogrammed lab coats autographed by leading DM researchers. Tell us when you participate in research studies and clinical trials.
“We’ve made great strides in advancing research for Care and a Cure, but we won’t find treatments or a cure for myotonic dystrophy without the active participation of people living with this disease,” said John Porter, MDF chief science officer. “During the 2017 Every Body Counts! campaign I hope all our community members will look for ways to support clinical trials and studies.”
“We applaud the Myotonic Dystrophy Foundation for their continued support in raising awareness for rare diseases and educating their community on the significant role patients play in research studies and clinical trials by encouraging their participation,” said Kristen Angell, membership manager of the National Organization for Rare Disorders (NORD).
“We are delighted that since we started Rare Disease Day in 2008 it has grown year on year,” said Lara Chappell communications director of EURORDIS-Rare Diseases Europe. “It is now a truly international campaign that everyone can participate in to show their solidarity with people living with a rare disease and their families.”
Rare Disease Day is organized by patient advocates who have joined with EURORDIS, a non-governmental patient-driven alliance of patient organizations representing 733 rare disease patient organizations in 64 countries. EURORDIS serves as the voice of 30 million people affected by rare diseases throughout Europe.
*Rules for Lab Coat Giveaway: The first 10 MDF community members who enter a new study or trial during the month of February will receive a lab coat monogramed with their name and signed by a leading DM researcher. Only MDF patients and family members who sign up for a new research study or trial (not one in which they are already engaged), between February 1-28 are eligible to win. Researchers, clinicians and other DM professionals are not eligible to win.
Questions about the Every Body Counts! campaign? Email Jazzy Wright, communications manager, at firstname.lastname@example.org.
Rare Your Jeans Photo Contest
To raise awareness for Rare Diseases, the Give Back Girls and Guys are sponsoring a photo contest. Find an old pair of jeans and use your creativity to make them rare. Post a photo to this page wearing your rare jeans. Use the #rareyourjeans. Submit photos by 9pm. Best photo wins a prize.