US Hereditary Angioedema Association (HAEA) is an organization that provides a wealth of resources and support not only for people diagnosed with Hereditary Angioedema, but also for their caregivers, educators, and healthcare professionals. The HAEA offers wide-ranging information about HAE, including its diagnosis, triggers, and treatments. For those newly diagnosed, HAEA serves as a support system, offering patient stories as a form of emotional support and encouragement.
Notably, the association provides multiple resources for different users. For people with HAE, they offer access to a dedicated portal, HAE Caf, and an emergency toolkit. These resources are helpful for individuals managing HAE, as well as for healthcare professionals who need guidance in identifying and treating this condition. The association offers an extensive database of physicians and encourages participation in clinical trials to advance the understanding and treatments of HAE.
The HAEA also provides resources specifically tailored for youth, adults, parents, and caregivers dealing with HAE in their lives. The organization offers a reimbursement guidebook, guides for women with HAE, and a tool for shared decision making, allowing for a more personalized, assistive approach to managing HAE. Moreover, the HAE TrackR is another tool from the HAEA designed to help patients keep a record of their condition.
Beyond providing resources and information, HAEA also encourages community involvement. Advocacy is a major part of the organization's activity, evinced by the Grassroots Advocacy Network they've established. They organize fundraising events, offer volunteer opportunities, and operate a scientific registry for those interested in contributing to the HAE community. Clinical trials and youth-oriented activities are also promoted as part of the involvement with HAEA.
On a corporate level, the HAEA takes great pride in its mission, team, and partners. The association is proactive in making announcements and producing newsletters to keep its community informed. HAE research remains a vital part of the HAEA's agenda, attesting to the organization's commitment to providing current and quality information about the condition.
During the COVID-19 pandemic, HAEA expressed a deep concern for their community. They offered reassurances of continued support, giving an empathetic message on their continued work on HAE-related issues amid the global health crisis.
In conclusion, US Hereditary Angioedema Association has proven to be a comprehensive resource for those affected by HAE, their caregivers, as well as healthcare professionals. They are committed to educating individuals about HAE, fostering a supportive community, and continuing to contribute to research and information related to this condition.
