Table 3.
Resources for Selected Cancer Predisposition Syndromes.
| Disorder | Support group or resource name | Support group | Research/Registry | Educational resource | Financial support available | URL |
|---|---|---|---|---|---|---|
| Fanconi Anemia | Fanconi Anemia Research Fund | X | X | X | X | https://www.fanconi.org/ |
| Genereviews | X | https://www.ncbi.nlm.nih.gov/books/NBK1401/ | ||||
| Telomere Biology Disorders | Team Telomere | X | X | X | X | https://teamtelomere.org/ |
| Genereviews | X | https://www.ncbi.nlm.nih.gov/books/NBK22301/ | ||||
| Bloom Syndrome | Bloom Syndrome Registry (Weil Cornell) | X | X | http://www.med.cornell.edu/bsr/ | ||
| Bloom Syndrome Association (NH) | X | X | X | X | https://www.bloomsyndromeassociation.org/ | |
| Werner Syndrome | International Werner Syndrome Registry (Univ of WA) | X | X | https://dlmp.uw.edu/research-center/werner/registry | ||
| Japanese Werner Syndrome Consortium | X | Not currently available online | ||||
| Rothmund-Thomson | RTS Foundation | X | X | https://www.rtsplace.org | ||
| Xeroderma Pigmentosum | Xeroderma Pigmentosum Society (NY) | X | X | https://www.xps.org/ | ||
| XP Support Group (UK) | X | X | X | https://xpsupportgroup.org.uk/ |