ALys amyloidosis
Synonyms: Familial amyloid nephropathy due to lysozyme variant | Familial renal amyloidosis due to lysozyme variant | Hereditary amyloid nephropathy due to lysozyme variant | Hereditary renal amyloidosis due to lysozyme variant | Lysozyme amyloidosis
A rare hereditary amyloidosis with primary renal involvement characterized by amyloid deposition in the kidney glomeruli and medulla gastrointestinal tract liver spleen and slow disease progression. Symptoms and signs include nausea vomiting dyspepsia gastritis gastrointestinal hemorrhage abdominal pain hepatic rupture sicca syndrome purpura and petechiae lymphadenopathy and renal dysfunction.
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 2024
Newly diagnosed with
ALys amyloidosis?
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
Amyloidosis Research Consortium
The Amyloidosis Research Consortium (ARC) is a patient-focused nonprofit, harnessing the power of collaboration and innovation to advance science and both improve and extend the lives of those with amyloidosis.
Help Hope Live
Help Hope Live assists individuals living with catastrophic injuries and illnesses to fundraise toward their medical expenses and related costs.
New Zealand Amyloidosis Patients Association
To make a positive and lasting impact in New Zealand, helping Amyloidosis disease patients from various disease subgroups ( AL, AA, hATTR, Wild Type) by working with local and international doctors, pharma treatment entities, as well as government agencies to bring approved funded treatment drugs into NZ for suffering patients. We desire to help build a lasting support system within the NZ health framework. We want an excellent wrap-around network of care to achieve for the sufferer to achieve a positive outcome in their well-being. This mission includes the wellness of the patient's caregiver and family whose needs, we feel, have been neglected.
Syndromes Without A Name (SWAN) Australia
Provide information, support and advocacy to families caring for a child with an undiagnosed or rare genetic condition.
Clinical Trials
For a list of clinical trials in this disease area, please click here.