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.
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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