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Support For Children With Rare Illnesses

Posted Apr 28, 2017 - 11:12am

“There is hope…don’t give up.”

When a child is diagnosed with a rare illness, it can be devastating for parents.

Depending on the condition, there may be multiple resources that can be tapped into for advice, information…and a shoulder to lean on when it becomes overwhelming.

But what if the diagnosis is so rare, there are no resources? No shoulders? Families can feel all alone.

In a recent article in the Washington Post, parents of children diagnosed with conditions that lack any networks have realized that they have to build their own.

These are families that have “joined Yahoo groups, created Facebook pages, held fundraisers and started Go Fund Me pages to garner media attention" and advocate for their children.

Their message to other parents? You are NOT alone.

  • Read the article (and be sure to visit the links in it, as well – some beautiful, touching, moving stories).


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