Resources to get started
HACA can help
Resources for getting started
Welcome to the bleeding disorders community! Whether you are a parent with a new baby or an adult just finding out your diagnosis, we are here for you. The chapter can provide you with a wealth of opportunities for education and – best of all – the chance to meet and connect with other people facing a similar situation.
Here are a few resources to get you started on your journey:
If you’re not already connected, contact the pediatric hemophilia treatment center at Children’s National Health System. Their staff will work tirelessly to answer your questions and can guide you in the decisions you make for your child. Learn more about the center and how to contact them.
HACA and the Children’s HTC work together to provide other services and items your child might need as they grow with a bleeding disorder. The center’s social worker offers a monthly support group funded by the chapter’s fundraising efforts, and HTC staffers often attend or present at HACA educational events. You’ll have opportunities to get to know your HTC staffers outside of the clinic. HACA can also provide medical alert jewelry, kneepads, shoe inserts, helmets and other items that might be needed by your child, but please talk to the HTC social worker, who will then coordinate these purchases with the chapter.
The National Hemophilia Foundation offers a great website, Steps for Living, that covers the ages and stages of growing up with a bleeding disorder.
HACA has a Families of Children with a Bleeding Disorder group that meets three times a year for a variety of activities. We’ve had educational luncheons, a visit to a local farm with a hayride, meetings at local parks, safe fun in a soft playroom, and more. This is just another opportunity for you to connect with other parents of children age 10 and under that have a bleeding disorder. We publicize these meetings in our weekly email blasts, as well as on the calendar page of this website.
We also offer an annual education day, educational dinners, a women’s support group, opportunities for advocacy and much more. To join the chapter and be added to our email list, please fill out this membership application and return to email@example.com.
Some people learn about their bleeding disorder as an adult. As with pediatric care, it’s best to associate with the hemophilia treatment center so you can receive the comprehensive care it provides. Most patients in the DC area go to the HTC at the Clinical Coagulation Laboratory, a part of Medstar Georgetown University Hospital’s Lombardi Comprehensive Cancer Center. There is also a hemophilia treatment center at Virginia Commonwealth University and Johns Hopkins Hospital (Both of these centers treat both adults and children).
There is a wealth of information about bleeding disorders, treatments and much more on the websites of our two national organizations, the National Hemophilia Foundation and the Hemophilia Federation of America.
The chapter offers many educational and networking opportunities through our support groups, educational dinners, annual education day and other unique events. To join the chapter and be added to our email list, please fill out this membership application and return to firstname.lastname@example.org.
Here to help!
If you have other questions, please feel free to contact HACA’s Executive Director Brenda Bordelon at 703-352-7641. She would be happy to guide you in the right direction!