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There are many groups that can help you adjust to life with a rare disease and atypical-HUS specifically. This is a partial list of organizations that may be helpful to you.
Dedicated to helping people with rare, or “orphan,” diseases. This organization helps patients access assistance programs, hosts meetings for patients with atypical-HUS and their families to help them connect to others, and provides information on rare diseases by sharing patient's personal stories.
A volunteer organization open to patients, family, friends, caregivers, researchers, and medical personnel. The Foundation encourages patients and researchers to share information and their personal experiences to foster a better understanding of atypical-HUS. The overall goal is to gather people together to improve the lives of patients and families dealing with atypical-HUS.
Fighting kidney disease and helping people live healthier lives—with an unmatched scope of programs that support people wherever they are in their fight against kidney disease—from prevention through post-transplant living.
Dedicated to preventing kidney disease, improving the health and well-being of individuals and families affected by kidney disease, and increasing the availability of kidneys for transplantation.
An organization that works to meet the needs of people living with rare diseases. This organization aims to build awareness of rare diseases and to provide resources and connections to patients and their families. The Global Genes Project hosts meetings for patients with atypical-HUS and their families across the country.
Through the collaboration of its affiliates, the aHUS Global Alliance will promote global awareness of aHUS, work with international aHUS researchers, and, by supporting newly emerging national aHUS patient groups, bring relief and support to those affected by aHUS to save, and improve the quality of, more lives.
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