Thursday, October 20, 2016

We are the RAREvolutionary people. Stand up for Scientific Research.

This post is sponsored through Buzzoole.

I was recently introduced to the RE(ACT) Community, a growing network to share information and boost research about rare and orphan diseases. A disease is considered “rare” when it affects less than 1 in 2000 people, and it is considered “orphan” when it is rare and it is characterized by a scarcity of medications and healthcare plans.

The idea behind this project is to connect an international network of researchers, patients, caregivers, and donors in order to support medical development and scientific research for rare and orphan diseases. It’s a patient-centered project, offering direct involvement to different types of stakeholders. Their mission is this: “We are the RAREvolutionary people. Stand up for Scientific Research.”
You can learn more about the project in this short video.

I don’t personally have a rare or orphaned disease – in fact, according to the Arthritis Foundation, about 1.5 million people are living with RA in the United States alone. However, even having a more “common” disease, I do understand what it feels like to fight for research dollars and to not have as many treatment options as I might want. And if it feels like an uphill battle to someone with so many others who can fight with me, I can only imagine what it must feel like to someone living with a rare or orphan disease.

I also think that supporting scientific research is something that will ultimately benefit all of us, and in this case you can support research with your voice and social media reach. The RE(ACT) Community currently has a database of almost 7,000 rare diseases, and once a disease is followed by at least 15 people researchers can submit scientific projects and start crowdfunding campaigns.

There are actually several types of arthritis listed in the database, including reactive arthritis, enthesitis-related arthritis, oligoarticular juvenile arthritis, systemic-onset juvenile idiopathic arthritis, and juvenile psoriatic arthritis. It seems to me that research into any type of arthritis might ultimately be beneficial for everyone living with arthritis – as well as more research into various autoimmune diseases and how to treat them!

If you are interested in joining the RE(ACT) Community you can do so here


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