Dear Addy: Finding The Right Hematologist

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Dear Addy,
What skills and experience should I look for in a hematologist? My son was recently diagnosed with hemophilia and I’m willing to move to another city, so my son can get the best care possible.
Diligent Patient
Dear Diligent,
Most importantly you want to make sure that all of the hematologists you consider to treat your son have experience treating children with hemophilia. When searching for a hematologist, ask your son’s primary care doctor to refer you to local a hematologist. Your son’s doctor may direct you to a federally-funded hemophilia treatment center (HTC) in your area, where the health professionals have experience in treating people with hemophilia. If you are not located near an HTC, your son’s doctor may direct you to a few local hematologists.
Once you have a list of potential hematologists in hand, you will want to learn more about your candidates. Whether you are referred to an HTC or local hematologists, you can search for the hematologist by name on the American Society of Hematology (ASH) website. The site gives you basic information on each doctor in your search results along with educational background, medical society memberships, areas of interest, and contact information. Find out how much experience each doctor has with caring for children with hemophilia and which doctors are covered by your health care plan. Feel free to schedule time to meet and speak with the candidates about their practice and experience.
HFA has a web page entitled “Newly Diagnosed” which offers tips on what to do when you first receive your diagnosis. This includes “getting connected” to your local HFA member organization. The member organization may be a good resource to connect you with families who see the hematologists in your area. These families may be able to give you valuable insights into the communication skills and “bedside manner” of your candidates.
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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 “Dear Addy.” Questions submitted to this column are edited in order to protect privacy and should be considered educational only, not individual guidance.