The foundation's broad and diverse portfolio of brands and programming serve all those in the inheritable blood disorders community. Everyone – whether a patient, caregiver, loved one, or advocate – deserves accessible support and resources unique to them. With several innovative brands and 75 years of leadership in the blood disorders space, the programs on this page are some of the many leaders in making life with an inheritable blood and/or bleeding disorders more equitable and treatable.
Since its formation in 1990 in response to the HIV/AIDS crisis, HANDI has fulfilled information requests, provided quality educational publications, and made referrals to additional sources of assistance. HANDI processes thousands of requests annually from a variety of patrons – which include patients, family members, chapter staff, hemophilia treatment center providers, other health care professionals, teachers, students, international organizations, and the general public.
The subject areas of these requests reflect a wide range of needs – such as, hemophilia, von Willebrand disease, rare disorders, health care coverage, treatment, gene therapy, women’s issues, inhibitor concerns, and school issues.
CVR is a community-powered registry will help researchers understand what it really means to live with a bleeding disorder and how current treatments, therapies, and policies affect the community. CVR collects information from the people directly affected: people with bleeding disorders, their parents, siblings, partners, and caregivers.
People who participate in CVR will share information consistently over several years through surveys. This will allow researchers and participants to better understand how the care, treatment, and concerns of individuals and their family members across their lifespan.
Pathway to Cures is a new venture philanthropy investment fund focused on creating transformational impact across all inheritable blood disorders. Investing alongside and partnering with traditional private capital funds and other industry organizations, P2C will spur the development of inheritable blood disorder therapies, treatments, and technologies, changing the lives of the inheritable blood disorders community.
Since 2011, Steps for Living has served as a go-to online resource for life-stages education. With resources and tools divided by age groups — First Step, for ages 0–8, which focuses on helping parents navigate their child’s condition; Next Step, for ages 9–15, looks at education, independence, and healthy decision-making; and Stepping Out, for ages 16–25, covers high school, college, and early adulthood — there are age-appropriate tips and tools for everyone. Steps for Living was created with financial support from both the CDC and Pfizer, Inc.
Victory for Women celebrates the voices of women in the inheritable blood disorders community. With Victory for Women, women in the community can express themselves, ask their questions, share their challenges, and above all, celebrate the victory of standing up and being heard. This health initiative provides support, education, and resources for women and providers in the community to address critical issues and ultimately improve quality of life. Programs and content produced by are developed and/or reviewed by the Victory for Women Taskforce, which is made up of both consumers and providers. Victory for Women is supported by Biogen, CSL Behring, Grifols, Genentech, Hemophilia Alliance, Novo Nordisk, Octapharma, Shire and Pfizer.
Better You Know is a website for individuals who may experience symptoms of a bleeding disorder but have not yet been diagnosed. The site offers risk assessment, tools, and other information regarding diagnosis and care options. Better You Know aims to ensure individuals can take the first steps toward feeling better and improving and understanding their personal health
The Comprehensive Care Sustainability Collaborative (CCSC) convened in 2014 with two inaugural consensus meetings among health care stakeholders. The aim was to develop a framework for pilot programs that could be replicated across the United States between payers and hemophilia treatment centers (HTCs) to facilitate cost-effective hemophilia management integrating the HTC comprehensive care model.
Unite For Bleeding Disorders raises funds and cause awareness in more than 40 cities across the country. Through these Run/Walk gatherings, local communities are able to increase disease-related education, support services, and advocacy efforts in local areas.
HemAware is the foundation's award-winning magazine. Published twice yearly with supplemental special issues, HemAware and hemaware.org is where you’ll find the latest content relevant to the inheritable blood disorders community.