Patient Assistance Programs

Patient assistance programs can provide you with additional financial assistance to cover the costs of insurance, sometimes including co-pay coverage. Below are some organizations that can assist you with your PKU treatment in general, or specific components of treatment. Speak to your clinic about other potential resources to help you afford to stay on treatment for PKU.

The National Organization for Rare Disorders (NORD)

The National Organization for Rare Disorders (NORD) is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.

The National PKU Alliance is a Member of NORD

NORD has a variety of patient assistance programs for people with PKU. They can help identify what would be appropriate in your situation.

  • NORD Website CLICK HERE
  • Co-pay and medical assistance programs CLICK HERE
  • Health insurance and Medicare/Medicaid information CLICK HERE
  • State-by-state insurance information, contacts, and resources CLICK HERE

To contact NORD about PKU-specific assistance, call 1-855-628-0646 or email pku@rarediseases.org.

BioMarin Pharmaceutical Inc.

BioMarin is the company that makes Kuvan® (sapropterin dihydrochloride). BioMarin provides assistance for accessing Kuvan to people with PKU who respond to Kuvan treatment.

The BioMarin Patient Physician Support (BPPS) program can support you in finding out if you are a candidate for Kuvan treatment through a free trial of Kuvan. BPPS can also help you get insurance coverage for treatment if you are a responder.

For more information, speak to your clinic to start the process of determining if you Kuvan-responsive, or visit learn more about the BPPS program online.