The Hemophilia Alliance provides member hemophilia treatment centers (HTCs) with resources and services to sustain the comprehensive care model for people with bleeding and clotting disorders. It hosts an annual Advanced Social Workers Conference. Eligible attendees must have a minimum of two years of direct social work experience serving people with bleeding disorders.
The Arizona Hemophilia Association organizes a specialized annual weekend conference that focuses on the work of bleeding disorders summer camps. Designed by a planning team from around the country, NACCHO (North American Camping Conference for Hemophilia Organizations) is facilitated by nationally known presenters and leaders from the bleeding disorders community who share useful camp resources and techniques. Participants can exchange resource materials, meet with representatives from NHF, gather new ideas and share their best practices with people from other camps.
NHF's Annual Meeting is a vast and unique educational conference open to consumers, families and medical providers within the bleeding disorders community. The three-day conference, held in a different city in the US each year, offers a multitude of educational sessions just for social workers, as well as opportunities to professionally collaborate and network.
NHF's Insurance & Reimbursement Conference
NHF also hosts an annual Insurance & Reimbursement Conference for HTC social workers and chapter executive directors. The conference addresses policy, insurance and operational issues unique to the bleeding disorders community in both the public and private payer arenas. Attendees receive timely updates regarding changes in the national health insurance landscape, as well as useful tools to better serve consumers. For more information, contact Michelle Rice, NHF vice president for public policy & stakeholder relations, or Marla Feinstein, NHF public policy analyst.
The PEP mission is to offer an interactive program led by a team comprising trained parents and professionals that will help parents toward gain enhanced knowledge, insight and skills. The PEP program aims to help parents become emotionally, behaviorally and physically empowered to cope and parent successfully amidst the challenging task of parenting a child with an inherited, chronic medical condition. PEP offers an annual Train the Trainers seminar that focuses on teaching professionals and a select group of parents about the entire PEP program, with hands-on practice in understanding the PEP curriculum. For more information contact Karen Brumm, PEP administrative coordinator: 248-909-9PEP (248.909.9737).
Partners in Bleeding Disorders Education promotes excellence in care through education created by and for the federally funded hemophilia treatment center (HTC) network and providers from a variety of disciplines that serve patients with bleeding and other coagulation disorders. It offers on-site, interactive training for social workers and other members of the HTC team, as well as Partners PRN, online educational courses that address a variety of clinical areas. In addition, it provides a unique Presentation Skills Workshop for HTC providers who are interested in honing their presentation skills.
The purpose of the Provider Shadow Program (PSP) is to educate healthcare providers (HCPs) about the role of comprehensive care in the management of people with inherited bleeding disorders. The target audience includes physicians, nurses, social workers, physical therapists and other providers. The goals and objectives of PSP are to ensure that HCPs have:
- a fundamental core of knowledge on the comprehensive evaluation and management of patients with inherited bleeding disorders.
- an opportunity to directly observe the delivery of comprehensive bleeding disorders care in an established clinic setting as a model for developing such a clinic in their home institution.
- the fundamental core of knowledge necessary to deliver optimal care for children and adults with inherited bleeding disorders.
NHF created Steps for Living, an interactive website that comprehensively addresses a wide range of issues pertaining to people in the bleeding disorders community. In addition to Basics of Bleeding Disorders, the website also addresses topics unique to living with a bleeding disorder throughout the span of the life cycle. NHF also offers special training opportunities for HTC and chapter staff to help them bring the Steps educational programming to their local bleeding disorder communities.