Data from Orphanet are used to provide information on a disease's name, synonym(s), and overview. Reference: Access aggregated data from Orphanet at Orphadata. Orphadata: Free access data from Orphanet. © INSERM 1999. Available on http://www.orphadata.org. Data version May 2026
Newly diagnosed with
Hereditary angioedema with normal C1Inh not related to F12 or PLG variant?
Our RARE Concierge Services Guides are available to assist you by providing information, resources and connections as you navigate your rare disease journey.
Advocacy Organizations
Advocacy & Awareness for Immune Disorders Association (AAIDA)
AAIDA exists to provide support and advocate for the greater than 25 million Americans living with immune disorders. AAIDA works to promote research and create better awareness of immune disorders.
Cookies4Cures
Funding research into rare pediatric diseases
Mozambique Hereditary Angioedema Association
The Associação Moçambicana de Angioedema Hereditário (AMAEH) is dedicated to improving the lives of people living with Hereditary Angioedema (HAE) in Mozambique. We work to promote early diagnosis, equitable access to treatment, patient education, and psychosocial support, while advocating for the rights of individuals and families affected by HAE.
US Hereditary Angioedema Association
To lead a nationwide advocacy movement that focuses on increasing HAE awareness and education, empowering access to suitable treatment, and fostering ground-breaking research that includes searching for a cure.
Uganda Alliance of Patients Organization
Supporting patients to access quality, safe and patient-centered healthcare services.
Unfixed
Unfixed produces media that elevates stories of people living with chronic illness, rare disease and disability. The Unfixed portfolio of projects demonstrates that living well is not about eradicating our wounds and weaknesses but understanding how they complete our identities and equip us to help others. Current and past productions include multiple mini-series, a podcast and feature film.
accessia health
Accessia Health, a national charitable patient assistance organization, is dedicated to eliminating healthcare barriers for people with rare or chronic health conditions. Comprehensive services include personalized case management, financial assistance, education, and legal aid support. Our flexible funding model goes beyond copays, allowing individuals to pay for other essential medical expenses
Don't see your organization here. Let us know here.
Clinical Trials
For a list of clinical trials in this disease area, please click here.