About the Disease
Hereditary Angioedema (HAE) is an inherited genetic disorder that can affect the autoimmune system causing recurrent episodes of severe swelling, most commonly in the limbs, face, intestines and airway. The condition is a result of low levels or improper functioning of a protein called C1 inhibitor. While minor trauma or stress could trigger an attack, swelling often occurs without a known trigger. Untreated, attacks can occur much more frequently, with some reported cases of daily incidents. It's important to note that you can also be diagnosed with HAE without a family history as some diagnosed HAE patients are a result of a mutated gene, which is called De Novo Mutation.
Attacks usually occur in 3 parts of the body and include the following symptoms:
- Skin: Skin swelling can cause pain, dysfunction, and disfigurement. Swelling involving the patient's extremities can be very painful and debilitating
- Gastrointestinal Tract: Swelling in the intestines can cause severe abdominal pain, nausea, dehydration and vomiting, resulting in a possible trip to the Emergency Department in a hospital.
- Upper Airway: This requires immediate medical attention at the first sign of swelling of the upper airway. This is the most dangerous symptom of HAE since swelling in the airway can restrict breathing and result in a life-threatening obstruction. Studies of HAE families indicate that without treatment, death from laryngeal edema can be as high as 30%. In addition, 50% of HAE patients have experienced at least one laryngeal attack in their lifetime.
Attacks may involve one area of the body at a time, or they may involve a combination of areas. While people with HAE have reported various triggers of these types of attacks, emotional stress, physical stress, and dental procedures are a few of the many reported triggers.
About the Patient Care
Our dedicated Care Team will work with the physician's office and insurance on a patient's behalf so that our patients have more time to focus on their treatment and quality of life. We are here to listen, provide
counseling on treatment, including side-effect management, and assist with sourcing third-party financial assistance.
As part of treatment, we provide:
Dedicated Care Team
We provide prescribers and patients with a dedicated care team for each of our disease state programs. This includes a primary pharmacy contact, clinical education, side-effects management, scheduled refill calls, and a direct phone, fax and email address. In addition, your dedicated HAE patient advocate, Jenny, is here to assist you with any questions you may have or resources available to you. You can reach her at firstname.lastname@example.org
In-Home Patient- and Family-Centric Care
We administer a nationwide nursing network, allowing patients to pursue in-home treatment or receive training on self-administrated drugs. Our nurses are ideally positioned to establish a partnership with patients and their families in order to provide clinical education and coaching that strengthen the patient's capacity to achieve therapy goals.
Shipping and Coordination of Care
We provide free overnight delivery of medications and necessary medical supplies and manage the coordination of care between prescribers, sites of care, nurses and patients to ensure dispenses and drug delivery align with the date and location of service.
We successfully identify and assist enrolling patients into any and all manufacturer co-pay and foundation support programs in order to minimize a potential financial burden to patients given the high-cost of specialty medications.
24/7/365 Access to a Pharmacist
We provide prescribers and patients access to a pharmacist 24/7/365 to ensure patients are always cared for.
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