Be part of our advocacy group

Challenges and Opportunities

One of the greatest lessons we learn when we have someone in our life with a bleeding disorder is how to advocate. The very first time may be when we are presented with the opportunity to speak for someone who can’t speak for themselves, whether it’s in a doctor’s office, an emergency room, a school or on the street, we are advocating.

“If you have a voice, use it.
If you have legs, stand up.
If you have feet, step up.
If you have each other, fight together.”
― Janna Cachola

Have you ever had to decide what treatment is best for someone? Presented a school with a 504 plan? Explained what needs to happen in an emergency? Explained a bleeding disorder to a friend or family member? Those are all examples of you advocating, whether for yourself, a child, a partner of a friend.

We are asking you to take it to the next level. In the current climate of healthcare reform and ever changing treatments we are faced with many chances to speak to legislators and insurers about what our community needs to insure quality of life. Sometimes it’s as simple as telling your story or merely showing a picture.

“The 2019 Advocacy Day was an important day for our family, to visit with others in the hemophilia community and to share our stories with legislators and other policy makers. As awareness about key issues arises, so does progress.”

-Alissa DeJonge

If you’re interested in learning more, you can contact CHS at info@cthemophilia.org, our Connecticut advocacy leads Jennifer Banks, jennifer_banks@mckinsey.com,  Meredith Adler  merediddle@gmail.com .

New England Bleeding Disorder Advocacy Coalition (NEBDAC)

Mission:

To empower our community with tools, training and resources to become an effective network that will champion bleeding disorder quality of life initiatives in the New England states- Connecticut, Maine, Massachusetts, New Hampshire, Rhode Island and Vermont.

The Connecticut Hemophilia Society is part of a larger New England based advocacy group that tracks legislation is all six states to either support or combat bills and proposals depending on the effect they will have on bleeding disorder families and individuals in New England.

Advocacy is an important part of our ability to maintain access to appropriate care, in the current landscape of unstable health insurance is it crucial for us to remain vigilant to legislation that could threaten our security.

The most important person in any advocacy group is you. Often, all we need is your story. Members of NEBDAC are ready to help you tell it.