Advocate and Advance the Movement
To advocate and advance the movement, FAIR Time for Women is committed to the following:
* Increasing the collective momentum through communication and storytelling of a.) women who bleed to document challenges and gaps AND b.) of health care providers who are improving the quality of life for women through diagnosis, treatment, and care
* Challenging and encouraging all stakeholders, including care providers, to actively engage in championing and improving diagnosis, care, and treatment for women who bleed
* Enhancing awareness through regular communication with stakeholders and the public about the Coalition’s activities and impact
2023 Action Plans:
* Bringing attention to already accepted standards via a Sign-on endorsement of care providers to MASAC approved recommendations (#286) and HFA’s Bleeders Bill of Rights
* Creating hands-on practical tools and resources for women to utilize when accessing and communicating their care needs
* Conducting an analysis to identify achievable strategies that will support HTCs as they increase care to women
* Keeping the community updated of progress
From the FAIR Time for Women Coalition Director
How the FAIR Time For Women Coalition is Organized
FAIR Time for Women is a coalition that plans to dissolve upon accomplishing its goals in 2-4 years. Rare disease nonprofit, Upequity, has agreed to act as a fiscal sponsor for FAIR to manage coalition finances and assists with administrative operations.
Ashley Gregory
FAIR Director
The coalition is led by a director and an advisory board acts as a steering committee for FAIR Time for Women. Three active working groups; Advocacy, HTC Capacity & Support, and Data & Communications which are aligned to drive FAIR Time for Women toward achieving its goals. These working groups meet 1-2 times per month.
Quarterly, the FAIR Time for Women coalition hosts an online meeting of all interested parties and encourages individuals to join the grassrass membership. Coalition members are asked to promote the coalition and engage stakeholders in thoughtful discourse to advance FAIR Time for Women goals.
Meet Our Board of Advisors
The FAIR Time for Women Coalition is governed by an Advisory Board of patients, patient advocacy leaders, physicians, nurses, and patient advocates.
Our Working Groups
Working Together – Achieving Equitable Treatment - Transforming Lives for Women and Girls!
This coalition exists to build a grassroots movement to advance equitable access to diagnosis, care and treatment for women and girls and those assigned at birth, with bleeding disorders. To facilitate this, FAIR Time for Women Coalition has identified three key focus areas for our volunteer working groups.
* Data and Research
This group is charged with identifying and condensing as much of the research and data that has been developed and published in the diagnosis, care and treatment of women with bleeding disorders.
* Communication
This group is charged with ensuring FAIR is widely communicating the needs of women with bleeding disorders and identifying others doing the same and asking how we can support their work.
* Advocacy
This group is charged with identifying and championing key areas of change, processes or policies that can improve the quality of life for women with bleeding disorders.
Our working groups consist of patients, family members, health care providers, industry representatives, advocacy organizations, and others who have expressed an interest in furthering the FAIR Time for Women Coalition mission. If you are interested in joining of one our working groups, please click the button below!
FAIR Time for Women is building a grassroots movement to advance equitable access to diagnosis, care and treatment for women and girls and those assigned female at birth, with bleeding disorders such as hemophilia, VWD and others.