Organisations — uterine adenosarcoma patient-voice layer
Last verified: 2026-09-01. The auditor re-fetched the main-table URLs except Sarcoma Foundation of America, whose site returned HTTP 403 to automated access; its changing numerical claims were removed. Searches rerun on 2026-09-01 did not identify an adenosarcoma-only organisation. Entries cover uterine sarcoma or sarcoma in general.
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 |
https://foundationforwomenscancer.org/ |
2026-09-01 |
| Sarcoma UK |
UK |
Support line 0808 801 0401 / supportline@sarcoma.org.uk; information, support, and research funding |
https://sarcoma.org.uk/ |
2026-09-01 |
| Sarcoma Foundation of America |
USA |
Sarcoma organisation retained as a directory entry; service and funding claims were not re-verified because automated access returned HTTP 403 |
https://curesarcoma.org/ |
automated re-fetch blocked 2026-09-01 |
| Sarcoma Alliance |
USA |
Practical resources and assistance with the cost of an expert second opinion |
https://sarcomaalliance.org/ |
2026-09-01 |
| National Cancer Institute |
USA |
Patient PDQ for uterine sarcoma, including adenosarcoma as a named subtype and FIGO adenosarcoma staging |
https://www.cancer.gov/types/uterine/patient/uterine-sarcoma-treatment-pdq |
2026-09-01 |
| 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 |
2026-09-01 |
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 2026-09-01) |
| 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, 2026-09-01: mission includes education, research, and public awareness; it describes partnership with SGO.
- Sarcoma UK homepage, 2026-09-01: support-line number/email, 5,900 UK diagnoses/year, over 100 funded research projects, and over £9.8 million invested were present.
- SFA could not be re-fetched by the auditor. Exact funding, grant-count, trial-count, and service claims from the build were removed rather than carried forward without live verification.