NKH International Family Network Disease Support Organization Last Updated: Jul 30, 2019 08:34:57 am Established: 1995 Area Served: International We’re a network of families with children who have NKH (Nonketotic Hyperglycinemia), a rare and still incurable metabolic disorder. We share information, advice and emotional support with families living with NKH. Website: http://www.NKH-Network.org Diseases Supported Glycine Encephalopathy York Road, London London, SW11 3SU United Kingdom email@example.com 1 address 1 contact Show All This organization has not provided any social media links. Staff Speaks: English, All of the above with translation. Telephone Translation: No (Translation services available for other languages) Our Organization Unincoporated Nonprofit International Organization 501(c)3 Non-Profit Professional/Medical Board Board of Directors Paid Staff Our Financials This organization has not provided Financial details. N/A Funding for Services N/A Annual Budget N/A Funding for Research Our Membership 400 Membership Size N/A # of Chapters 400 Total Number on Mailing List 350 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 Resources Disease resources include educational and informational materials that can be tagged to appear on specific disease pages. UCL, Prof. Nick Greene + NKH Added On: Jul 30, 2019 Category: General Language(s): English Disease(s): Glycine Encephalopathy An overview of the research currently being conducted out of UCL for NKH. #TeamMikaere Added On: Jul 30, 2019 Category: Blogs Language(s): English Disease(s): Glycine Encephalopathy A blog of a family living with NKH. A look at behind the scenes as to what life with NKH is like. Joseph's Goal Added On: Jul 30, 2019 Category: General Language(s): English Disease(s): Glycine Encephalopathy Joseph's Goal is an NKH charity. They run the UK NKH annual conference, and fund Prof. Nick Greene at UCL - the world leader in gene replacement therapy for NKH. Foundation for NKH Added On: Jul 30, 2019 Category: General Language(s): English Disease(s): Glycine Encephalopathy A patient informational website for those living with Nonketotic Hyperglycinemia NKH Crusaders Added On: Jan 15, 2013 Category: General Disease(s): Glycine Encephalopathy NKH Crusaders is an NKH charity in the US. They work to spread awareness for NKH & NKH Crusaders. They also run the annual US NKH conference in Boston. Showing 3 of 5 resources. Show All Show Less 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?