National PKU Alliance Disease Support Organization Last Updated: Jan 3, 2019 03:54:07 pm Established: 2008 Area Served: National The National PKU Alliance works to improve the lives of individuals and families with PKU and pursue a cure. Website: http://npkua.org/ Diseases Supported Benign Hyperphenylalaninemia • Phenylketonuria • Phenylketonuria type 2 This organization has not provided an address. This organization has not provided any social media links. Staff Speaks: English Telephone Translation: No (Translation services available for other languages) Our Organization Incorporated Nonprofit National Organization 501(c)3 Non-Profit Professional/Medical Board Board of Directors Paid Staff Our Financials N/A Funding for Services $375,000 Annual Budget N/A Funding for Research Funding Sources: N/A This organization receives funding from a company that produces a test or treatment for the condition it serves: No If yes, % of funding from such companies? Our Membership 700 Membership Size 17 # of Chapters 1,200 Total Number on Mailing List 1,000 People with Conditions in Your Mailing List What We Do Support & Peer Matching Referrals to Matching Individuals/Families Peer Support Peer-to-peer Counseling Referrals to Local Chapter or Group Patient Navigators Translation Services Therapy & Counseling Professional Counseling Crisis Intervention Grief Counseling Medical Referrals Medical Care Clinical or Treatment Centers Rehabilitation Services Respite Care Genetic Testing Genetic Counseling Legal Advice Workplace Issues Malpractice Help with Adoption or Placement Financial Assistance Medical Care Transportation Assistive devices Insurance Scholarships Home Modifications Research Referrals to Research Studies Registry of affected individuals Blood and Tissue Sample Storage Education & Training Telephone Helpline E-mail List Training Speakers Bureau Advocacy Training Other Pen pal Program Summer Camp This entry will be permanently deleted. Are you sure you want to continue? Are you sure you want to change the status of this editor?