CIPA.FYI / INDEX
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Search covers what this site wrote about each entry, in any of the three languages. It does not reach into the source documents.
Tomorrow patient association
A catalogue of information on the condition, daily-life support, professional guidance, picture stories and historical surveys. Some entries link to files; others are bibliographic listings only.
Tomorrow patient association
An index to disease background, symptoms, participation and everyday-life questions.
Shimada Ryoiku Medical Center for Challenged Children and guideline authors
A multidisciplinary professional reference, with a Japanese original and an English translation.
Japan Intractable Diseases Information Center
The linked page is intended for healthcare professionals and includes diagnostic criteria used in Japan and links to guidance. Tabs lead to public information and FAQs.
Nagasaki University-led sweating disorders research group
Information on the research team, meeting programmes, guidance references and a registry that includes CIPA.
National Center for Child Health and Development
Information for patients and families about the condition, examinations and the centre’s care arrangements, led by neurology with dentistry, ophthalmology, orthopaedics, general medicine, dermatology and rehabilitation.
Information Center for Specific Pediatric Chronic Diseases
A disease overview from Japan’s Information Center for Specific Pediatric Chronic Diseases, with links to diagnostic guidance and medical opinion forms for applications.
Tomorrow patient association
A lead to a handbook for families, teachers and support workers.
Tomorrow patient association
A historical survey covering life experiences, difficulties and support systems.
Tomorrow patient association
A historical account of how Japan’s disability welfare systems affected people with CIPA around 2011, with discussion of reforms, services and policy documents from that period.
Tomorrow patient association
A two-page illustrated resource on risks associated with impaired pain perception and sweating, covering activity, wheelchair use, burn prevention, temperature management and everyday observation.
Tomorrow patient association
School-based picture stories help children understand sweating and pain. Care points for adults are written into the school nurse character’s lines and run through the narration rather than forming a separate appendix.
OrphanAnesthesia / DGAI
A professional reference on perioperative assessment and management.
ENISNIP / University Hospital Aachen and collaborators
A research lead concerning specialist collaboration and patient participation.
CMT-Austria
A cross-condition association with an HSAN-related information role.
Společnost C-M-T
A Czech CMT patient association participating in ENISNIP’s international HSAN/CIP research collaboration.
HSAN IV Belgium
A family-founded group describing community connections, awareness, fundraising and research-support aims; its directory also includes support beyond CIPA.
AWMF / Society for Neuropediatrics
A broader differential-diagnosis guideline that explicitly mentions HSAN IV / CIPA.
British Paediatric Neurology Association (BPNA) / BPNSU
A UK paediatric CIP study using clinician case reports and medical records; the project page includes NTRK1.
Contact (Contact a Family)
A disease-information page and UK family-support route.
A Gift of Pain
A lead to family exchange and historical community activities; CNN reported on the founding family and giftofpain.org in 2006.
NYU Langone Dysautonomia Center
A project collecting yearly medical-record information; NYU describes planned collaboration with other specialist clinics around the world.
GeneReviews / University of Washington
A professional disease reference with management and follow-up sections.
GeneReviews / University of Washington
A professional overview covering several genetic causes, including NTRK1.
NORD
A condition report with background and reference leads.
NIH GARD
Disease names, introductory information and support-resource leads.
NLM MedlinePlus Genetics
A concise introduction to CIPA, its characteristics, causes, inheritance and related resources.
Soroka University Medical Center / Ben-Gurion team
A report on Soroka University Medical Center’s CIPA clinic, established in 2018, involving infectious disease, orthopedics and dedicated nursing, with social work and other specialties as needed.
Taiwan Foundation for Rare Disorders
A condition-specific information page within a broader rare-disease organization.
Rare Disease Hong Kong
A disease-information page with external resource leads.
KDCA Helpline
A government disease-category entry, together with the HSAN IV / NTRK1 correspondence and the local support codes and markers.
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