Day 4 #HAWMC: Care Page

Your child, or you, have been diagnosed with Hemophilia or another bleeding disorder, so where do you go on line to find help? I have found a few places that have helped our family through the past 5 years.

1. National Hemophilia Foundation

2. Hemophilia Federation of America

Both of these are great websites to learn about your child's, or your bleeding disorder, product safety, research updates, educational conferences, news and advocacy.

3. Find your local chapter. I feel this is key in finding local support and finding other members of the bleeding community.The bleeding disorders may be considered a rare disease but there are still others out there...you are not alone. As a caregiver it's great to meet other mom/dads that are going through the same things we are. It also helps my son be able to meet other kids around his age that have a bleeding disorder.

I feel the more you know and can educate yourself on the bleeding disorder the better equipped you'll be in advocating for your child in daycare, school, sports and life. Advocate can be a scary word. But it doesn't have to be. Advocate could mean going to Washington, DC and talking with lawmakers. Or it could mean finding your voice to advocate for your child at school in gym class or the classroom. You define what advocate means to you and your situation.

Hopefully I've given you a place to start and find a home in the bleeding community.