This section contains responses to FAQs sent to NBDF’s information resource center HANDI. It includes where to find specific resources that can help you appropriately take care of a loved one with a bleeding disorder. Explore this page to learn more and be sure to visit us again as we continue to provide additional answers to the FAQs!
Please be aware that there are specialized health centers dedicated to the care of individuals with inheritable bleeding disorders called hemophilia treatment centers (HTCs). These centers are a part of a national network of federally funded entities structured to provide comprehensive or “integrated” health care, Each HTC consists of a core team including a hematologist, nurse, physical therapist, and social worker. To locate the HTC nearest you, please contact us at firstname.lastname@example.org or by calling 1.800.424.2634 on Mondays to Fridays from 9am-5pm EST. You can search the CDC’s HTC directory too.
For more information on treatments centers located abroad, you may search, by country, the World Federation of Hemophilia’s Global Treatment Centre Directory.
We recommend you provide them the contact information of an HTC near you. To locate a center in your city or state, please search the Centers for Disease Control’s HTC Directory.
If your PCP is interested in learning about expert treatment recommendations then you can refer them to our searchable Medical and Scientific Advisory Council (MASAC) documents homepage, which includes recommendations and advisories on FDA-licensed therapies, various treatment and management topics, research, and other general health concerns of the inheritable bleeding disorders community.
Yes! Guidelines for Growing is a resource that includes a series of mini publications that each deal with childrearing and development milestones by specific age groups. They can be found on our Publications webpage. Regarding school, there are a lot of great resources available on the webpage Child Care and School, located on the Steps for Living website.
On our Hemaware website, there is an article titled Opening Up About Mental Health, that discusses the signs of mental illness in kids. If a child is being bullied at school, then the article “Bullies, Be Gone!” can help you determine how you and your child can respond.
For direct assistance or referral, parents/caregivers are strongly encouraged to seek out the expertise of a clinical social worker at the HTC where the child receives care. Social workers can assess the psychosocial needs of individuals, provide referrals, and counsel accordingly, all in coordination with the rest of the HTC care team.
There is a Hemaware article titled Care for the Caregiver, which has tips for caregivers on how to better take care of themselves.
You can also watch Parent Partnership & Mental Health video to learn strategies and tips on how to balance roles and designate time to nurture your mental health and well-being.
Also watch Taking Care of Yourself While Taking Care of Others to learn more about the signs of caregiver burnout and to learn great ways to practice self-care.
There are a large number of bleeding disorder chapter organizations that can help you access peer support and make connections at local events. They provide various types of additional support and are operating in most U.S. states and in Puerto Rico. Find the chapter nearest to you by visiting NBDF’s Chapter Directory.