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Dear Addy,

My son has hemophilia and I鈥檓 nervous about his safety as he starts school this year. How can I advocate for him at school and make sure his bleeding disorder is understood?

Signed,

Nervous Nancy


Dear Nervous,

You are not alone 鈥 many families struggle with this experience! Taking a proactive approach to educate your son鈥檚 school about his needs and safety will benefit everyone involved in his care. Use the following resources to facilitate conversations with the school:

  • HFA鈥檚 Back to School toolkit includes presentations, articles, documents, and flowcharts and will help you explain your son鈥檚 bleeding disorder to school personnel. The toolkit also provides information regarding 504 plans, Individual Education Plans (IEP), and Individual Health Plans (IHP).
  • HFA鈥檚 Bullying Prevention Toolkit will give you tools to talk with your child about bullying and empower him to address concerns with you and with his school if an issue occurs.
  • Learning Central is HFA鈥檚 new interactive education platform. The short modules in Learning Central offer a well-rounded overview of bleeding disorders through medically reviewed information. Consider using the information to develop an educational unit like a lesson, online module, or a fun arts and craft assignment, to teach school staff and other students about your son鈥檚 bleeding disorder. This would be a great opportunity to get your son engaged in advocacy, too!

Don鈥檛 be afraid to speak up, especially if you have concerns about your son鈥檚 safety. Advocacy is a vital tool for the bleeding disorders community and passionate members like you help spread awareness. Your involvement may also encourage other parents to be more vocal about their children鈥檚 needs. If children learn about bleeding disorders now, they are likely to be more accepting and understanding of your son and other students with health concerns.

Sincerely,

Addy

Have a question? Click HERE. Your name will be changed in the response.

HFA frequently receives questions from the bleeding disorders community related to advocacy issues. The questions often impact the entire community. In an effort to reach the largest audience possible with our responses to these widely applicable questions, HFA developed 鈥淒ear Addy.鈥 Questions submitted to this column are edited in order to protect privacy and should be considered educational only, not individual guidance.

 

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