e-sygoing.link — Rare Disorders https://e-sygoing.link Latest links in the Rare Disorders category en-us Wed, 27 May 2026 14:50:44 -0400 Kindler Syndrome https://e-sygoing.link/link/5784167-kindler-syndrome An article and case study of this rare disease. Includes links. Mon, 10 Nov 2025 10:11:12 -0500 https://e-sygoing.link/go/5784167 Office of Rare Diseases https://e-sygoing.link/link/5784170-office-of-rare-diseases Information on more than 6000 rare diseases, including current research, publications from scientific and medical journals, completed research, ongoing studies, and patient support groups. Sat, 08 Nov 2025 00:40:28 -0500 https://e-sygoing.link/go/5784170 Information Centre for Rare Diseases and Orphan Drugs https://e-sygoing.link/link/5784169-information-centre-for-rare-diseases-and-orphan-drugs Offers an Internet portal. Includes news, forums, rare disease and orphan drug info and registration forms Mon, 06 Oct 2025 13:05:04 -0400 https://e-sygoing.link/go/5784169 Human Growth Foundation https://e-sygoing.link/link/5784162-human-growth-foundation Information about growth-related disorders through education, research, and advocacy. Member driven organization. Mon, 11 Aug 2025 22:30:03 -0400 https://e-sygoing.link/go/5784162 Tetrahydrobiopterin https://e-sygoing.link/link/5784165-tetrahydrobiopterin Information on structure, biosynthesis and pathophysiology of BH4 and tetrahydrobiopterin deficiency. Thu, 24 Apr 2025 22:27:33 -0400 https://e-sygoing.link/go/5784165 Contact a Family https://e-sygoing.link/link/5784163-contact-a-family Information about this organization as well as the CaF directory of specific conditions and rare disorders. Also details about the Rare Disorders Alliance - UK. Fri, 09 Aug 2024 05:14:29 -0400 https://e-sygoing.link/go/5784163 National Organization for Rare Disorders, Inc. https://e-sygoing.link/link/5784161-national-organization-for-rare-disorders-inc Information about NORD, its programs, special events and the variety of services offered. Includes a rare disease, organization and orphan drug database. Diseases are listed alphabetically for easy searching. Thu, 07 Mar 2024 16:55:14 -0500 https://e-sygoing.link/go/5784161 Lymphangiomatosis and Gorham's Vanishing Bone Disease https://e-sygoing.link/link/5784168-lymphangiomatosis-and-gorhams-vanishing-bone-disease Provides general information and a personal account, including pictures and X-rays. Also offers patient contact and an email discussion group. Wed, 07 Feb 2024 10:52:55 -0500 https://e-sygoing.link/go/5784168