Emory Genetics Lab Blog

The Voice of Rare Disease Day: Are You Listening?

Posted by Danyella Davis on Feb 4, 2016 11:00:00 AM

Thanks to Rob Pleticha, Online Patient Community Manager with the European Organisation for Rare Diseases for his blog contribution. rare-disease-day-2013-site-bannerv21.pngFebruary 29th is the rarest day of the year. February 29th is Rare Disease Day. This day, which brings rare diseases into the spotlight, is a EURORDIS initiative recognized all over the world as an opportunity to raise awareness about rare diseases and the experiences of people living with these conditions. Anyone can participate, including patients, medical and care professionals, policy makers, researchers and academics by showing their solidarity for people living with a rare disease and their families.

This year will mark the ninth edition of Rare Disease Day, which began in 2008. Hundreds of thousands of people around the world celebrate Rare Disease Day each year by organizing events like chilli cooking contests, city marches, disease conferences, school lessons, morning discussions over tea, and even meetings with policymakers. If you are organizing an event, add it to RareDiseaseDay.org and check the map to see what is happening in your area.

The Rare Disease Day 2016 theme ‘Patient Voice’ recognizes the crucial role that patients play in voicing their needs and in instigating change that improves their lives and the lives of their families and carers.

 

RareConnect – bringing patients together around the world! 

Rare Disease Day has broken down borders and brought together people affected by rare diseases.  Similarly, another EURORDIS initiative, RareConnect.org aims to unite patients and carers in online communities.

RareConnect hosts online patient communities, blogs, and discussions to highlight the voices of people living with a rare disease. Posts are translated by humans across six languages: English, French, German, Italian, Spanish, and Portuguese, allowing people to discuss how to manage the symptoms of rare diseases, no matter where they live. 

RareConnect partners with over 600 international rare disease patient associations to stimulate conversations and connections across 82 disease-specific Communities are built in partnership with international patient associations, anyone can ask a question about their rare disease or share their story in a discussion group.

Patient associations, many times represented by patients or their loved ones, drive the communities by creating, moderating, and regularly updating the community to allow isolated people to reach others and find information. If there isn’t yet a community for your rare disease on RareConnect, start a discussion by asking a question or sharing a blog.

This Rare Disease Day, join the RareConnect members who are recognizing the day by sharing their rare disease story, adding their events, following Rare Disease Day on social media, and watching the livestream of the EURORDIS Rare Disease Day symposium event on how to improve patients’ access to rare disease therapies.

If you're looking for even more ways to get involved, join our webinar on Thursday, Feb. 25th @ 1EST. titled, "Leading the Charge: The Role of Patients as Chief Advocates."

 

 Rare_Disease_Webinar_Blog_Image.jpg

Register HERE

 

 

Be apart of the #ImRare conversation. Join EGL's social media platforms for patient stories, resources, photos and videos about the #ImRare journey. 

New Call-to-action New Call-to-action New Call-to-action New Call-to-action

 

 

 

Subscribe to Email Updates