This post is sponsored through Buzzoole.
When my second son was born with bilateral clubfeet, breathing and cardiac issues that later required him to be fed via g-tube for 18 months, no one knew what to make of him.
After sitting in countless specialists offices and having a few genetic tests done, he eventually grew out of all the things that troubled him as a tiny infant.
However, my view of the world changed forever. I learned there are so many searching for answers about their health. And this is where the RE(ACT) Community comes in.
Did you know there are over 8000 Rare and Orphan diseases out there?
A “rare disease” (in Europe) is one that affects less than 1 in 2,000 people.
An “orphan disease” is when it is both rare and there is a scarcity of drugs to treat and healthcare plans.
Thankfully, there are many scientists and researchers looking for the answers to these questions. However, as with everything else, support and financial backing is needed for them to continue searching for the answers so many desperately seek.
This project is working to connect researchers, patients, caregivers and donors to support medical development and scientific research for rare and orphan diseases. It is patient centered and offers direct involvement to different types of stakeholders.
Their mission is simple:
You can learn more about the project in this short video.
The RE(ACT) community is working to do the following:
Researchers can meet and collaborate.
Researchers and patients can share their studies and health experiences.
Users can exchange knowledge about relevant studies, conferences, and meetings.
Users can support the RE(ACT) Community overall project or donate to a single disease or research project.
I am always eager to share when I find worthwhile causes studying rare diseases and searching for answers for families.
What I like the collaborative attitude putting patients and researchers together so they can work toward a common goal with input from both sides!
If this is something that interests you, start by signing up here!