These services can be provided to you directly by Recordati Rare Diseases at no cost to help support you/your child while on CYSTADANE therapy. For medical care, please continue to contact your doctor.
*This program is not meant to substitute for the advice provided by a medical professional. All decisions regarding patient care must be made with a healthcare provider, considering the unique characteristics of the patient. Always consult a physician if you have health concerns.
The Patient Advocacy Liaison will contact you upon receipt of the opt-in form.
If you or your child is diagnosed with a genetic disorder that causes homocystinuria, you’ll want to find out as much as you can about the disease. The following educational and advocacy groups provide information about rare genetic disorders, including the different types of homocystinuria. You can explore these groups online.
HCU Network America
The HCU Network America strives to inform and provide resources for patients and families, create connections, influence state and federal policy, and support advancement of diagnosis and treatment for HCU and related disorders.
Organic Acidemia Association
The Organic Acidemia Association is a patient advocacy organization that provides support and information for people with inherited metabolic disorders. Homocystinuria caused by several cobalamin defects—cblC, cblD, cblF, cblJ, and cblX—is included as a part of the group’s advocacy activities.
NORD - National Organization for Rare Disorders
NORD is patient advocacy organization dedicated to helping people with rare diseases. NORD provides information on homocystinuria due to CBS deficiency.
Downloadable information for patients and families to learn more about the genetic disorders that cause homocystinuria and instructions on how to take CYSTADANE.
Living with Classical Homocystinuria
Living with MTHFR deficiency
Living with a Cobalamin Cofactor Metabolism Defect
How to Take Cystadane
CYSTADANE (betaine anhydrous for oral solution) is indicated in children and adults for the treatment of homocystinuria to decrease high homocysteine blood levels. Homocystinuria is a rare genetic disorder in which there is an abnormal accumulation of the amino acid homocysteine in the blood and urine. The following are considered to be homocystinuria disorders: