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CJD Care India, support network for people affected by prion disease in India (since 2017) logo

CJD Care India, support network for people affected by prion disease in India (since 2017)

CJD Care India is a small volunteer style support network for people in India affected by CJD and other prion diseases. Its website says it was started in 2017 to connect people affected by or studying prion disorders, to bring together people who can offer support and care, to keep a dialogue with doctors and researchers, and to share information on the disease and research updates. It is listed as a full member association of the CJD International Support Alliance. Its public content is a set of February 2021 information posts (FAQ, caregiving ideas, glossary) that draw mainly on US sources such as the CJD Foundation and the US National Prion Disease Pathology Surveillance Center. No legal form, registration, Indian hospital partner, surveillance link or event was found on any page opened, so the entity rests on thin, self-published sources. It appears to be the only Indian prion disease support group found so far. Information only, not medical advice.

Key facts

  • The group says it was started in 2017 with the aim of bringing together people affected by or studying prion disorders, uniting people who can give reliable help and care, keeping a dialogue with doctors and researchers toward a cure, and sharing disease and research information.
  • The CJDISA directory lists CJD Care India under Member Associations, not associate members, with the same 2017 description and only its website as contact.
  • Its website offers sections for research, families, donations, caregiving ideas, a glossary and FAQs, and gives an Indian phone number and a gmail address as contact; the site says it was made possible by private donations.
  • No legal form or registration (trust, society, section 8 company, tax exemption) is stated on any page opened.
  • Its FAQ post, dated 3 February 2021, covers treatment status, transmission, the forms of prion disease, tests including RT-QuIC, blood and organ safety and autopsy, and is oriented to US resources, naming the CDC, NIH, the US National Prion Disease Pathology Surveillance Center and the CJD Foundation; it names no Indian testing centre.
  • Its caregiving post, dated 13 February 2021, gives practical home care guidance and points families to CJD Foundation tools and the US helpline.
  • Its glossary post explains prion disease symptoms, tests (EEG, MRI, 14-3-3, tau, RT-QuIC) and human and animal forms, citing the CJD Foundation.
  • Its research page carries only website template placeholder text, with no research updates, trials, partners or events listed as of 17 October 2026.
  • All site pages carry a copyright line naming Records Science LLP; no public record explaining that firm's role was found.

Timeline

  1. 2017CJD Care India started.
  2. 2021FAQ and glossary posts published on the group website.
  3. 2021Caregiving ideas post published; FAQ and glossary updated.
  4. 2023Website footer copyright year.
  5. 2026Listed as a full member association in the CJDISA directory.
Sources for this page