Japan
Tomorrow patient association
A Japanese patient association founded in 1993, centred on families affected by CIPA, incorporated as an NPO in 2002.
7 linked research records
View source and related records →Organizations
Patient organizations, clinical institutions and research teams grouped by recorded source. This is not a referral directory.
Japan
Shimada Ryoiku Medical Center for Challenged Children and guideline authors
A Japanese social welfare corporation that operates the Shimada Ryoiku Center and Shimada Ryoiku Center Hachioji.
1 linked research record
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Japan Intractable Diseases Information Center
An information site operated by the Japan Intractable Diseases Research Foundation under a Ministry of Health, Labour and Welfare subsidy programme, for patients, families and healthcare professionals.
1 linked research record
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Nagasaki University-led sweating disorders research group
A research group funded under the Ministry of Health, Labour and Welfare policy research programme for intractable diseases, led from Nagasaki University, publishing information for patients and clinicians nationwide.
1 linked research record
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National Center for Child Health and Development
A national research and development agency in Setagaya, Tokyo, comprising a hospital and a research institute, providing care for children and expectant mothers.
1 linked research record
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Information Center for Specific Pediatric Chronic Diseases
An information portal operated by the National Center for Child Health and Development under the Ministry of Health, Labour and Welfare programme for designated paediatric chronic diseases; its statutory basis is the Child Welfare Act.
1 linked research record
View source and related records →International
OrphanAnesthesia / DGAI
A joint initiative of the Scientific Working Group of Pediatric Anesthesia of the German Society of Anesthesiology and Intensive Care Medicine (DGAI), Orphanet and the European Society of Pediatric Anesthesia, publishing anaesthesia recommendations for rare diseases.
1 linked research record
View source and related records →International
ENISNIP / University Hospital Aachen and collaborators
ENISNIP is a transnational research network funded through the European Union's Horizon 2020 programme via the European Joint Programme on Rare Diseases (EJP RD), bringing together seven European clinical and basic research centres focused on HSAN and CIP. The Institute of Human Genetics and Genomic Medicine at University Hospital Aachen is one of its founding participating institutions, not a separate legal entity. The site provides separate sections for professionals and for patients and family members.
1 linked research record
View source and related records →Europe
CMT-Austria
An Austrian association for patients with hereditary polyneuropathy (Charcot-Marie-Tooth syndrome), whose stated aims include spreading current information to those affected and to the public. The site does not give an association register number.
1 linked research record
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Společnost C-M-T
A Czech patient association for Charcot-Marie-Tooth disease (CMT), founded in June 1999 and registered as an association (spolek/z.s.) with the Prague City Court (register entry L 10085). Its stated purpose is to advocate for CMT patients' interests domestically and internationally, and to raise awareness among affected families and both professional and general audiences. The site does not give an IČO registration number.
1 linked research record
View source and related records →Europe
HSAN IV Belgium
A Belgian patient organization for HSAN IV, registered as a non-profit association (VZW, enterprise number 1005.961.462), focused on connecting the HSAN IV community and linking research internationally.
1 linked research record
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AWMF / Society for Neuropediatrics
This guideline involves two distinct bodies: AWMF operates the guideline registry, GNP is the lead society for this guideline. AWMF (the German umbrella association of scientific medical societies) describes itself as documenting and publishing its member societies' guidelines on a site open to the public free of charge; it is a registered non-profit association (Amtsgericht Frankfurt am Main, VR 13755) and did not author this guideline. GNP (Gesellschaft für Neuropädiatrie e.V.), founded in 1975 and an AWMF member society since 1978, describes itself as the scientific society for child and adolescent neurology in Germany, Austria and German-speaking Switzerland. Both are registered non-profit associations (e.V.). This site was unable to establish a single version of GNP's registering court and registration number from its own site, and therefore does not list them here.
1 linked research record
View source and related records →Europe
British Paediatric Neurology Association (BPNA) / BPNSU
The British Paediatric Neurology Association (BPNA, registered charity 1159115) and its surveillance unit BPNSU. BPNA describes itself as a professional organisation for medical professionals in the UK and internationally who specialise in the care of children. The project indexed here is listed on its page as led from Addenbrooke’s Hospital, Cambridge.
1 linked research record
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Contact (Contact a Family)
A UK registered charity for parents and carers of disabled children aged 0 to 25 anywhere in the UK. “Contact” is the trading name of the registered charity Contact a Family, number 284912 in England and Wales.
1 linked research record
View source and related records →International
A Gift of Pain
A Gift of Pain, Inc., based in Minnesota, United States, describes itself as “a support group for all families affected by insensitivity to pain”. Its site does not use the terms CIPA, HSAN IV or NTRK1.
1 linked research record
View source and related records →United States
NYU Langone Dysautonomia Center
The Division of Autonomic Disorders at NYU Langone Health’s Dysautonomia Center, a university hospital department researching and treating autonomic nervous system disorders.
1 linked research record
View source and related records →United States
GeneReviews / University of Washington
GeneReviews is published by the University of Washington, Seattle. It describes itself as "an international point-of-care resource for busy clinicians", providing clinically relevant and medically actionable information for inherited conditions in a standardized journal-style format, covering diagnosis, management and genetic counseling. Each chapter is written by one or more experts on the specific condition and goes through editing and peer review before publication; chapters are updated every four to five years (or as needed) by their authors. It currently comprises more than 900 chapters.
2 linked research records
View source and related records →United States
NORD
A United States non-profit for rare diseases, describing itself as founded after the passage of the Orphan Drug Act of 1983 to formalise the coalition of patient advocacy groups that helped pass that law.
1 linked research record
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NIH GARD
The Genetic and Rare Diseases Information Center, a public health resource managed by the National Center for Advancing Translational Sciences (NCATS) at the U.S. National Institutes of Health, providing free access to reliable, easy-to-understand information about genetic and rare diseases.
1 linked research record
View source and related records →United States
NLM MedlinePlus Genetics
A health information service of the U.S. National Library of Medicine, part of the National Institutes of Health, described as an online health information resource for patients and their families and friends.
1 linked research record
View source and related records →Middle East
Soroka University Medical Center / Ben-Gurion team
An Israeli university medical centre and a Ben-Gurion University research team. This site indexes their published retrospective study of a multidisciplinary CIPA clinic.
1 linked research record
View source and related records →China
Taiwan Foundation for Rare Disorders
A rare-disease foundation in Taiwan, China. This site indexes its CIPA condition page published in Traditional Chinese.
1 linked research record
View source and related records →China
Rare Disease Hong Kong
A registered charity in Hong Kong, China (registration number 91/16233), founded in December 2014. It describes itself as the first patient organisation in Hong Kong formed by patients and relatives across different rare diseases, with the support of specialists and academics.
1 linked research record
View source and related records →South Korea
KDCA Helpline
The rare disease information portal operated by the Korea Disease Control and Prevention Agency (KDCA), describing itself as a site providing specialist information on rare diseases. It hosts disease information, a section listing the relevant legislation, and entry points to patient support programmes.
1 linked research record
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