Caregivers for adults with HAE may be called upon to administer therapies, provide emotional support, answer HAE-related questions, interact with doctors, or help navigate financial matters. HAE is extremely rare, and so are HAE caregivers like you. You will likely find that many healthcare providers have never heard of HAE or encountered someone with the condition. The support you provide is extremely valuable and you play an important role in helping your loved one successfully manage life with HAE.
You are not alone, and the US HAEA is here to help!
You are not alone! The US Hereditary Angioedema Association's (HAEA) community includes many other caregivers, like you, who are experiencing similar challenges. We are always here for you to answer questions, offer kind and compassionate support, and provide resources to help with every step of your HAE journey. Additionally, we have many tools and resources to help caregivers better understand HAE. These include how to navigate being a caregiver, optimize communication with a medical team, anticipate challenges, and successfully manage HAE.
Become a Member
Become a member of the HAEA and receive current scientific information on HAE and FDA-approved HAE treatments. It's free and your privacy is protected.
The HAEA Member Kit is a tool that serves as a personalized guide for HAEA members. By completing a brief questionnaire, you can curate the resources that are most relevant to you and your unique experience as an adult caregiver.
Build your member kit
In this nationwide research project driven by HAEA community members, people living with HAE can track and submit information about HAE attacks, symptoms, and therapies. This data is confidential and is the driving force behind new HAE research and discoveries.
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HAE Advocates help with physician referrals, peer-to-peer support, guidance on access and reimbursement for HAE medicines, and more. We provide a wide range of personalized services for people with HAE and their families – we are here for you!
CONTACT USHereditary Angioedema, or HAE, is a very rare and potentially life-threatening genetic condition that involves recurrent attacks of severe swelling (angioedema) in various parts of the body, including the hands, feet, genitals, stomach, face, and/or throat. Swelling in the airway can restrict breathing and be fatal. Episodes may be triggered by physical trauma or emotional stress; however, swelling often occurs without a known trigger.
The guidelines provide the medical community with a comprehensive scientific overview of HAE in all its forms (type I, type II, and HAE with Normal C1-Inhibitor) and offer best practices that emphasize the importance of the patient voice in determining an optimal treatment approach.
There are currently eight therapies approved by the FDA for preventing and treating HAE attacks, along with generic options for an on-demand therapy. People with HAE and their physicians have options for developing an HAE treatment plan tailored to meet each individual's unique needs.
The HAEA is committed to helping HAE families overcome barriers, successfully manage HAE, and lead normal lives. We offer important resources that will help you navigate life as a caregiver. There are also many ways to stay involved in our community!
If you would like the HAEA’s help with a physician referral or assistance locating an HAE-knowledgeable physician in your local area, please click below.
We actively recruit for clinical trials, the process required to demonstrate the effectiveness and safety of new HAE medicines. The HAEA posts clinical trial information on our website and social media channels that identifies the sponsor and medicine being tested, as well as contact information for an HAE Advocate who will be happy to provide additional details.
Traveling with HAE involves some important consideration. We have compiled tips to help you prepare for a successful trip.
Health insurance coverage can be complicated. We have developed a comprehensive insurance reimbursement guidebook to help you understand the process, and overcome any obstacles getting access to your prescribed medicine.
This educational resource offers important information from HAE experts that explains HAE attacks and provides guidance on treatment options. Your efforts to share this toolkit will support people with HAE in your community and may help identify those who have swelling symptoms, but have not yet received a proper diagnosis.
Visit our Events Hub to learn about upcoming events in your area, virtual engagements, and ways to volunteer.
Join our grassroots advocacy initiatives and support the HAEA’s efforts for continued access to HAE therapies, financial support for treatment, and funding for research.
The HAE Speaks podcast features people with HAE, their caregivers, and medical professionals discussing a range of important topics with the goal of connecting our community through shared experience.
