Having a new baby is a joyful yet challenging time in a parent’s life. When the new baby is diagnosed with a bleeding disorder it adds a whole new layer of stress to a growing family. This toolkit offers resources to help tackle the future, better familiarize yourself with the bleeding disorders community and learn more about your new baby’s diagnosis.
- presentations聽(recorded webinars, videos)
- downloads聽(articles, documents)
- links to other resources
聽Note: Inclusion of resources by a third party site or organization do not constitute an endorsement by聽HFA, it’s Board, volunteers or staff.
|聽||HFA Families Webinar: Allowing Your Children to Soar聽 While it may seem early to be thinking about independence for your newborn, it’s a fact of life that all children eventually leave home, and we want our children to the best they can when they’re ready to take that step! This webinar provides helpful information on building independence in our children.|
|HFA Families Webinar: It’s Genetic, Baby!聽 Having a child is overwhelming. Having a child that could possibly have a bleeding disorder is even more overwhelming! If you are thinking about having more children in the ever-changing bleeding disorder landscape, it is comforting to be prepared. Meg Bradbury, genetic counselor, presented an overview of bleeding disorder genetics, genetic counseling and testing options. Meg also shared the benefits to genetic counseling.|
|HFA Families Webinar: Prophy for Protection聽 What is prophy? As parents we hear and see that prophylaxis is best but, do we really understand the benefits of it? What happens to our joints if we do not adhere to a prescribed prophylaxis regimen? Joint bleeds can be overwhelming and difficult to understand. In this webinar, presented by Kerry Vela, pediatric and adult physical therapist at the John’s Hopkins Hemophilia Treatment Center, and hosted by HFA’s Families Program delved into the process and benefits of prophylaxis. Listen to learn what happens to a joint after repeated bleeds and how to discuss the risks and benefits with our children.|
|Webinar: Decoding the Documents聽 Having a new diagnosis means that health insurance is ever so important. Let’s face it: understanding everything that is in your insurance policy is no easy task. From understanding how prescriptions are covered, to figuring out where to get your factor, you almost need a specialized degree just to read it.|
|Infusing Love: Moms Blog: HFA’s weekly Moms blog is published every Wednesday. The blogs are written from a parent perspective and can help you feel less isolated. One community member once said, “On days like to day, I read the Infusing Love Blog on Hemophilia Federation of America’s Website… it’s literally the next best thing to a hemo mom’s hug.”|
|What You Should Know Resource: Identifying what babysitters need to know about your/your child’s bleeding disorder and how to convey that information can be a struggle. This document helps you organize that important information on a postcard. Parents can even hang it on the refrigerator for easy reference.|
|Comprehensive Clinic Toolkit: As part of your or your child’s bleeding disorders management, it is customary to be seen by your healthcare provider or Hemophilia Treatment Center at least once a year for a comprehensive clinic visit. This toolkit contains fillable resources and presentations that will help you organize your questions and concerns before, during and after your clinic visit.|
|ER Visit Toolkit: Living with a chronic condition like a bleeding disorder can often mean frequent visits to emergency rooms and hospitals. Becoming a good self-advocate and developing good communication skills with providers can lead to better health outcomes. This toolkit offers resources to help you be a better partner in your or your child’s healthcare.|
|Medical Consent Form: This customizable document is an example of a medical consent form. It could be used for minor children if the parent/guardian leaves the child in the care of another adult.|
|Bleeders Bill of Rights: This tool, developed by HFA’s Care Access Working Group (CAWG), is about self-advocacy and empowerment. Use it to remind yourself of your rights, your choices, and your power.|
|Dear Addy: 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. The following are Dear Addy questions and answers about emergency care, finding a hematologist, and informed consent.|
|Infusion Log: Medical professionals and insurance companies often ask for records of infusions to help determine the best course of treatment. This log can be printed for recording infusions.|
HFA’s Learning Central: With new families being diagnosed and many approved medications, emerging treatments, and gene therapies in clinical trials, HFA addresses the need for patient and caretaker education through Learning Central. Learning Central offers online learning modules, accessible via computer, tablet, and mobile device, using an integrated learning management system (LMS).
This LMS provides adult learners with knowledge in an easily-accessible environment and measures learning success. Learning is broken into small, but dense, learning pieces so users can learn a lot in just a few minutes. It is also learner-decision-based: The learners may choose what they wish to learn about and in what order. In some cases, they also have a choice regarding the complexity of the material (e.g., choosing basic or scientific information).
The HFA Community Research Portal: The HFA Community Research Portal is a platform HFA uses to collect data for research on the bleeding disorders community to more effectively serve the needs of bleeding disorder patients and their families.
The Portal uses bank level security for access. This includes using 256-bit Advanced Encryption Standard to collect and store your data in an encrypted state. All data that you provide is protected from unauthorized discovery, access, use and/or export through intense security protections in concert with specially designed user tools and services.
Local Member Organizations: Local organizations are established to provide education and social support to those effected by bleeding disorders. It is helpful to build a network of people near you. Find your local member organization by using our member organization map!CDC, Centers for Disease Control & Prevention: The CDC Division of Blood Disorders offers many resources to learn more about bleeding disorders, including a directory of the federally funded Hemophilia Treatment Centers (HTC) across the United States.The Foundation for Women and Girls with Bleeding Disorders: A directory of clinics and services, across the nation, for women and girls with bleeding disorders.
LINKS TO OTHER RESOURCES
|Get Involved: HFA invites you to discover what we have to offer through our many programs, services, events, outreach and advocacy education. Find out more about how you can get involved!