Over the last 3 years our team has worked hard to expand the RareConnect project and we are thrilled to announce we now have over 40 active global, disease specific communities with the launch of the undiagnosed brain diseases community! Since its inception in 2009, RareConnect has provided a safe space where individuals and families affected by rare diseases can connect with each other, share vital experiences, and find helpful information and resources.
Check out some recent case studies I’ve put together to illustrate the value of these global, rare disease communities:
This was posted by a patient with cryopyrin-associated periodic syndromes patient on the RareConnect forum: “Wow! Your story almost sounds exactly like mine! I had some of the same issues when I was little and everyone looked at me like I was crazy! I finally got so furious being misdiagnosed numerous times that I did my own research and found the NOMID Alliance page. When I saw the rash picture I screamed out loud “I think I figured it out!!” Well, 2 months later, here I am! I got my first injection of Ilaris today. I was also in tears when I found people that understood what I felt! Because of RareConnect, I was able to get a diagnosis, and help others in my family that have dealt with CAPS issues for generations!”
Three patients with hereditary spastic paraplegia connected via RareConnect in September of 2012. Little did they know they were all located in a small part of Northern Ireland. Due to their close geographic proximity, they were able to discuss local physicians and treatment sites. Without RareConnect, they never would have been able to find each other.
In May of 2012, a member of our Waldenstrom macroglobulinemia community shared his testimonial on RareConnect. A 59-year old firefighter from NY found out about having this disease a year after being a first responder at the World Trade Center following 9/11. Within weeks, we had three other members comment on his story. They were all exposed to contaminates at Ground Zero and now all have been diagnosed with Waldenstrom macroglobulinemia. This correlation with environmental factors and this rare cancer would have never been acknowledged without our platform. We sent this information on to researchers in the United Kingdom.
RareConnect continues to provide a safe, global forum for patients and families to connect. We are committed to promoting awareness and understanding through daily life experiences, fostering global conversation, and providing the latest information for each disease-specific community.
RareConnect was created by EURORDIS (European Rare Disease Organisation) and NORD (National Organization for Rare Disorders) to provide a safe space where individuals and families affected by rare diseases can connect with each other, share vital experiences, and find helpful information and resources. To find out more on our community launch process, check out our Prezi! Or if you are part of an established patient organization and interested in launching a global community, please contact me directly at firstname.lastname@example.org.
How do you use online communities?
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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