Getting Specific

The Arthritis Foundation is the perfect place to start doing research, making connections and getting involved in the arthritis community, but what if you are looking for something more specific?

The Juvenile Arthritis Association is another non-profit that focuses specifically on pediatric rheumatologic diseases. Even though it is a young organization, the JAA has already orchestrated several exciting events such as a celebrity yard sale and The Sweet Suite featured recently in the Wall Street Journal. For the more than 300,000 children affected in the US alone, the creation of such a dynamic organization focused on their specific condition is very exciting news! Keep checking back to the JAA website as they add more content and resources for JA families.

Another amazing group, CureJM, provides support to parents and family members of children with Juvenile Myositis, a rare orphan disease classified under the JA umbrella. Even though it is specific to JM, early in my son’s (non-JM) diagnosis, we found many useful links, contacts and information that related to the various autoimmune conditions that we were facing.

As you begin to connect, start slow, and focus on reputable sources such as the ones I have listed above. Don’t allow yourself to get buried under an avalanche of information, which taken from the internet can often be questionable! Stick with well known or established sites which can direct you to other pertinent links,  trusted resources, events and individuals rather than trying to navigate uncharted waters on your own.  There will be plenty of time for broader exploration after you get a better feel for what’s out there, and you have a realistic picture of your child’s condition.
Good luck and happy surfing!

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