There is nothing more important to the future health of our community than protecting full access to HAE therapies, financial support for treatment, and funding for HAE research. We are, however, facing ever-increasing challenges that could threaten the progress that all of us worked so hard to accomplish in gaining access to and reimbursement for multiple therapies. Maintaining and even improving the availability of HAE medicines will only happen through continued fierce and well-organized grassroots advocacy.
We invite you to join the fight and become part of the HAEA Grassroots Advocacy Network!
The HAEA Grassroots Advocacy Network brings together HAE advocates who are passionate about safeguarding the health and well-being of people with HAE. Grassroots advocacy opens the door for communicating the HAE message and educating your elected officials on the federal and state levels.
Monitor and act upon
any legislative and regulatory matter that might affect access to life-saving medicine and health care for those with HAE
Educate legislators
at all levels of government on the unique and complex healthcare challenges faced by people with a rare condition such as HAE
Expand HAE research
at the National Institutes of Health (NIH)
Our experience shows that legislators respond when we take the time to explain the needs of the HAEA community. We work at national and state levels to cultivate a large grassroots network of advocates capable of effectively engaging their elected officials to advance a legislative and public policy agenda.
Every year, a large group of people affected by HAE (including adults and youth members) visit at least 60 strategically selected House and Senate offices in Washington, D.C. to discuss legislative issues that impact the HAEA community. We share our stories and educate elected officials on HAE, and reinforce our community's key public policy goals.
There are many important state-level efforts that parallel our national efforts. At the state level, our members participate in grassroots initiatives and prepare and deliver testimony in front of legislators, who make decisions on insurance regulations and HAE medicines covered by Medicaid. We also participate in efforts to address step therapy on a local level and to advocate for co-pay restrictions.
The youngest members of our community are also strongly encouraged to be part of the HAEA Grassroots Advocacy Network by joining our Youth Advocacy Network.
The Youth Advocacy Network is a branch of the HAEA’s Grassroots Advocacy Network that offers specialized youth-focused training and advocacy opportunities for teens and young adults. The Youth Advocacy Network amplifies our collective voices by rallying young people between the ages of 12 and 25 to be active players in communicating the needs of the HAE community to elected representatives.
Our HAE Advocates serve as the voice for over eight thousand people with HAE and their families. Our grassroots network regularly engages federal and state elected officials to raise awareness of legislative/regulatory policies that support broadened access to life-saving HAE medications.
We are looking for people interested in leading HAEA Grassroots Advocacy Network efforts in their region. If you are interested in getting more involved, please reach out to: Mike Mallory, mikemallory@haea.org.
If you're interested in becoming an HAEA volunteer grassroots advocate and would like to receive more details on how to help legislate change, please complete this form.
Dane Christiansen,
Executive VP, Health and Medicine Counsel of Washington D.C.
