PERSONALIZED SUPPORT FROM THE START
Call 1-844-HAEGARDA
(1-844-423-4273)
for HAEGARDA ConnectSM 8 AM - 8 PM
HAEGARDA Connect is committed to helping you gain access to HAEGARDA by offering personalized 1:1 services. Your treatment is our priority. Know you’re not alone when you have HAEGARDA Connect.
Personalized Support from a dedicated case manager
- Provides ongoing, one-on-one support throughout the HAEGARDA journey
Self-administration training
- A HAEGARDA nurse will teach you and/or your caregiver online or in person how to prepare the medicine and self-administer it correctly
Financial assistance programs
- Assistance with insurance navigation including co-pay support, as well as research into financial assistance options.
HAEGARDA Advocate Program
-
Provides you with the opportunity to learn from someone who has experience with HAE and therapy with HAEGARDA
- Advocates are not healthcare providers or medical experts and are compensated for their participation. For medical questions, patients should contact their physicians
HAE RESOURCES
If you need to find a doctor, the US Hereditary Angioedema Association can help you find an HAE specialist in your area
Discover patient organizations that advocate for people with HAE
- US Hereditary Angioedema Association (HAEA)
- International Patient Organization for C1 Inhibitor Deficiencies (HAEi)
Join support groups and discussion boards
Learn more about HAE from webinars and live dinner programs, and discover a rare diseases organization
- Learn about our webinars and live learning events in your area
- Find information from the National Organization for Rare Disorders, Inc (NORD)
HAEGARDA ADVOCATES
Living with HAE may mean making some adjustments and managing things a bit differently. Getting support from someone who knows what it’s like to have HAE can help you navigate through any challenges that come up so you can continue living a healthy, active life.
Jason
"Because I’ve lived without HAEGARDA, I know what a difference it makes."
Cheryl
"Don't let the disease control your life if you can control your disease."
Machelle
"It's important to me to prevent my HAE attacks because I'm a busy mom, a very busy wife, I have a job, I travel, I'm a patient advocate."
Our HAEGARDA Advocates are people who have personal experience living with HAE, so they know what you’re going through. They offer you encouragement, assistance, and advice by:
- Sharing their own experiences with HAEGARDA and life with HAE
- Answering nonmedical questions*
- Helping you better understand and manage your therapy
*Advocates are not healthcare providers or medical experts and are compensated for their participation. For medical questions, you should contact your physician.
Where do I start?
Connect with a HAEGARDA Advocate.
Call 1-844-573-7021, from 9 AM to 9 PM ET, for more information about the program.
LIVE EVENTS AND WEBINARS
Join us for a free live educational program for HAE patients and their
caregivers!
These programs feature a presentation from a physician who
treats HAE
and stories from an HAE patient like you.
HAEGARDA live program
JOIN IN PERSON: Come to a free in‑person event to meet advocates and ask questions.
or call 1-844-499-5646
Anyone under 18 years of age must be accompanied by a parent or caregiver
HAEGARDA live webinar series
JOIN ONLINE: Take part in our live webinar series, where you can ask questions and join in the discussion.
or call 1-844-499-5646
Anyone under 18 years of age must be accompanied by a parent or caregiver
ADVOCATE FOR YOUR FAMILY
Your loved one can live a full, happy life with HAE. You may be concerned about how having HAE will affect your loved one's life and your life. Many people find they can help successfully manage their loved one's condition by working with their doctors and live healthy, active lives.
HAE affects everyone differently
No two people are the same. The severity of HAE attacks, how often/where they occur, and the timing of attacks vary widely among individuals. The frequency of attacks can even change as a person gets older. Additionally, how people respond to treatment can vary as well, based on factors such as their weight.
Having HAE means your loved one will need to take a few precautions, such as:
- Identifying personal triggers and symptoms
- Always having an on-demand rescue treatment nearby
- Working to reduce physical and emotional stress
Know the precautions and understand triggers of an attack
Some of the following may trigger an attack:
Fatigue or Stress
Accidental Trauma
Dental or Medical Procedures or Surgery
Fever, Illness, Infection
Menstrual Cycle, Hormonal Changes
Certain Medications
Caregivers need support too. Find resources here.
- US Hereditary Angioedema Association (HAEA)
- With HAEGARDA ConnectSM learn about the resources available to your loved one with HAE
- Help them get the conversation started