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Organisations — uterine adenosarcoma patient-voice layer

Last curated: 2026-10-31. Directory entries cover uterine sarcoma or sarcoma in general. The Sarcoma Foundation of America homepage remains accessible; its subtype and statistics pages still returned 403. Foundation for Women’s Cancer homepage returned 403 on this fetch (was 200 on 2026-10-10). Other entries retain their last documented access dates below.

Organisation directory

Organisation Geography What it offers patients in this disease URL Accessed
Foundation for Women’s Cancer (works in partnership with SGO) USA / international Gyn-cancer education, research, and public awareness; homepage blocked on this fetch so changing claims omitted https://foundationforwomenscancer.org/ 2026-10-31 (HTTP 403)
Sarcoma UK UK Support line 0808 801 0401 / supportline@sarcoma.org.uk; information, support, and research funding https://sarcoma.org.uk/ 2026-10-31
Sarcoma Foundation of America USA Homepage links to sarcoma education, support/resources and patient stories; subtype/statistics pages remain blocked; changing numerical claims omitted https://curesarcoma.org/ 2026-10-31 (homepage 200; subtype/statistics pages 403)
Sarcoma Alliance USA Practical resources and assistance with the cost of an expert second opinion https://sarcomaalliance.org/ 2026-10-31
National Cancer Institute USA Health-professional PDQ still names adenosarcoma and restates FIGO adenosarcoma staging (content dated 2024-12-17); former patient PDQ URL now redirects to a hub that does not name adenosarcoma https://www.cancer.gov/types/uterine/hp/uterine-sarcoma-treatment-pdq 2026-10-31
American Cancer Society USA General uterine-sarcoma detection, diagnosis, staging, treatment, and survivorship information https://www.cancer.org/cancer/types/uterine-sarcoma/detection-diagnosis-staging.html 2026-10-31

Signposted, not entered

Name Why not in the main table Source of the signpost
Gynae Sarcoma email forum (groups.io) Closed/semi-closed peer group; contents not accessed (CONVENTIONS §3) Sarcoma UK support-group directory (re-verified 2026-10-10)
Endometrial Stromal Sarcoma Support and Share (Facebook) Closed group; ESS not adenosarcoma; contents not accessed Same
Sarcoma Patients in the UK & Ireland (Facebook) Closed group; contents not accessed Same

Not found

  • An adenosarcoma-specific patient organisation, registry, or named support group.
  • A patient-council priority-setting exercise for this histology.

Notes on verification

  • FWC homepage returned HTTP 403 on 2026-10-31 (was 200 on 2026-10-10); changing claims omitted.
  • Sarcoma UK homepage, 2026-10-31: site live (HTTP 200); adenosarcoma-specific subtype URL previously used returned 404.
  • SFA homepage returned 200 on 2026-10-31; its subtype and statistics pages returned 403. Homepage access does not establish the contents of blocked pages. Exact changing numerical claims remain omitted.
  • NCI health-professional PDQ still names adenosarcoma (FIGO adenosarcoma table present); content Updated remains 2024-12-17. The dcterms.issued meta on this fetch is 2026-10-28 and is a page-issue stamp, not a PDQ content revision. Patient hub /types/uterine/sarcoma/treatment still does not contain “adenosarcoma”.
  • ACS detection/diagnosis page (2026-10-31) cites NCCN Uterine Neoplasms Version 2.2026 (14 November 2025); the NCCN guidelines-detail page on the same day lists Version 3.2026. Parent PDF not independently retrieved.