Advocacy

Advocacy is essential within the bleeding disorders community.

We advocate through speaking with state representatives and senators
to gain access to healthcare and medication.

We advocate while speaking with our medical providers to ensure our needs are met.‍ ‍

We advocate in our community to participate, raise awareness, and grow confident in our ability to thrive.

Please hear from our community member David Salsbery-Fry with his advocacy speech shared at Washington Days 2026.

P.A.C.T. - Protect Access, Assure Coverage, Coach Community, Team Together

BDAI’s Advocate Ambassador Volunteer Program is geared toward building positive relationships with constituents and legislators at the state and federal level.

Becoming an advocate for BDAI will continue to ensure our needs are met by gaining access to healthcare and medication. Sharing personal experiences and policies that affect the bleeding disorders community is key.

Ambassadors serve as a point of contact with our elected officials. BDAI staff works together with ambassadors to help implement initiatives.  

  • BDAI’s Advocate Ambassador Volunteer Program

    BDAI’s Advocate Ambassador Volunteer program is geared toward building positive

    relationships with constituents and legislators at the state and federal level.

    Becoming an Advocate for BDAI will continue to ensure our needs are met by gaining access to

    healthcare and medication. Sharing personal experiences and policies that affect the Bleeding

    Community is key.

    Ambassadors serve as the strong point of contact with our elected officials. BDAI staff works

    together with ambassadors to help implement initiatives.

    Ambassador Roles & Responsibilities

    I. Establish and maintain relationships with legislators

    Ambassadors are asked to schedule regular in-district meetings building rapport, educating

    about bleeding disorders – and when appropriate - request action on the Illinois bleeding

    disorders community’s advocacy priorities. These meetings are a critical step in strengthening

    our relationship with all our elected officials.

    Sample Actions

    • Send letter or email of introduction to assigned elected officials

    • Request to be included in district mailings and e-newsletters of elected officials

    • Participate in district office visits

    • Track and attend town halls and other community events

    II. Recruit others to participate in our advocacy work

    Encouraging and recruiting others to participate in local advocacy activities helps to promote

    acceptance and understanding of people with bleeding disorders to our state and federal

    representatives. With more volunteers and a wider array of advocates, Ambassadors help to

    highlight the diverse issues around inherited bleeding disorders, the needs of our local

    community and the political power of advocates with rare chronic illnesses like ours.

    Sample Actions

    • Recruit and train additional volunteers to attend district meetings and events

    • Attend BDAI sponsored event sharing your successful efforts with others

    III. Support social media and other press opportunities

    The media - newspaper, radio, television, and social media - is a critical tool in promoting our

    advocacy issues. Messages carried by Ambassadors can influence legislators and the public.

    Telling your story is the powerful tool we have in this work.

    Sample Actions

    • Submit "letters to the editor" to local news outlets regarding specific legislative priorities

    • Participate in media interviews within congressional target area(s)

    • Post comments on local media websites

    • Post and share BDAI action alerts on social media

    • Capture your work as an ambassador on social media with pictures and posts

    IV. Report on congressional district activity, meetings, and events

    Ambassadors assist with and contribute in large part to our chain of communication with

    elected officials. Ambassadors record and report on all advocacy work in a timely manner.

    Sample Actions

    • Participate in Ambassador trainings and conference calls

    • Inform BDAI staff of requests for clarification and information from legislators and/or

    their staff within 24 hours of contact

    Estimated Time Commitment & Qualifications

    Ambassadors must be able to commit to a one-year term. Terms are renewable through an

    annual re-application process.

    Ambassadors should expect to dedicate 2-4 hours per month volunteering in this role. Time

    commitments will vary depending on the month and legislative issues. For example, more

    hours may be needed in the Spring when the State Legislature is in session – and also during

    March for Bleeding Disorders Awareness Month. While our Advocacy Program is year-round

    less may be needed at other times of the year.

    Ambassadors receive direct staff support

    The Ambassador Program is managed by BDAI staff. Our team supplies Ambassadors with

    compelling and relevant information, trainings, and updates to empower advocates to make a

    lasting impact for the bleeding disorders community.

    Support Includes

    • Regular updates highlighting our advocacy initiatives at the state and federal levels

    • Ongoing skill development and communications through Zoom Conference Calls

    • Special training sessions at various BDAI activities

Springfield Advocacy Days

Travel with BDAI staff and community members to the state capital and impact the legislative process. You’ll meet face-to-face with lawmakers and staff who shape statewide healthcare policy, become more informed on critical issues that affect your continued access to quality care, and learn effective grassroots advocacy techniques all while becoming empowered in the Illinois bleeding disorders community . This event is held in the Spring each year. For 2025, BDAI visited Springfield with two opportunities, partnering with Gateway and BCDI.

Click here to request more information.

Washington Days with NBDF

The National Bleeding Disorders Foundation (NBDF) hosts an annual advocacy event in Washington, D.C., on Capitol Hill. NBDF’s Washington Days is an opportunity for people affected by bleeding disorders to advocate for issues that are important to them and to the community. Recent years have seen more than 450 volunteer advocates from 47 states meet with legislators and staff to discuss maintaining key patient protections in the Affordable Care Act (ACA).

Click here to learn more.

Personal Advocacy

Advocating in your day-to-day life can be one of the most challenging parts of having a bleeding disorder or caring for someone with a bleeding disorder. One of BDAI’s goals is to provide you with the tools you need to self-advocate and lead you on your journey to empowerment.

We have events throughout the year specifically dedicated to advocacy and empowerment, and we provide community events that aim to strengthen your relationships within the community and inspire and be inspired by others.

You can also empower yourself through sharing your story! If we as individuals can share openly and honestly about our experiences, we can start to bring awareness to the bleeding disorders community.