LINKS FOR YOUR PATIENTS
Even though GIST, MDS/MPD, HES/CEL, DFSP, and Ph+ ALL are all relatively uncommon, there are a number of professional and advocacy groups that offer disease information, treatment advice, and other kinds of support. Patient associations can help patients find social networks, emotional support, and first-hand information about these diseases and their treatments.
| Name of organization | Web address | Country of origin | Types of cancer discussed |
|---|---|---|---|
| American Cancer Society | www.cancer.org | USA | All cancers |
| American Partnership for Eosinophilic Disorders (APFED) | www.apfed.org | USA | HES/CEL |
| Aplastic Anemia & MDS International Foundation | www.aamds.org | USA | MDS |
| Association Française des Patients du GIST | www.ensemblecontrelegist.com | France | GIST |
| Associazione Italiana GIST (AIG) | www.gistonline.it | Italy | GIST |
| CancerCare | www.cancercare.org | USA | General cancer education and support |
| Cancer Research UK | www.cancerresearchuk.org | UK | General cancer education and support |
| Chronic Myeloproliferative Disorders(CMPD) Education Foundation | www.mpdinfo.org | USA | MPD |
| Contactgroep GIST | www.contactgroepgist.nl | Netherlands | GIST |
| Das Lebenshaus | www.daslebenshaus.org | Germany | GIST |
| European Organisation for Rare Diseases (EURORDIS) | www.eurordis.org | France | General rare diseases |
| Gasztrointestinális Stróma Tumor | www.gist.hu | Hungary | GIST |
| Genetic and Rare Diseases Information Center | www.rarediseases.info.nih.gov/GARD | USA | General rare diseases |
| GIST Cancer Research Fund | www.gistinfo.org | USA | GIST |
| GIST Earth | www.gistearth.com | USA | GIST |
| GIST Support International | www.gistsupport.org | USA | GIST |
| GIST Support UK | www.gistsupport.co.uk | UK | GIST |
| Global GIST Network | www.globalgist.org | USA | GIST |
| Leukaemia & Lymphoma Research | www.beatbloodcancers.org | UK | All blood cancers |
| The Leukemia & Lymphoma Society | www.LLS.org | USA | Leukemia and lymphoma |
| The Life Raft Group | www.liferaftgroup.org | USA | GIST |
| The MyelodysplasticSyndromes Foundation | www.mds-foundation.org | USA & EU | MDS |
| National Cancer Institute | www.cancer.gov/cancertopics/types/soft-tissue-sarcoma | USA | Soft tissue sarcoma |
| National Cancer Institute’s Cancer Information Service | www.cancer.gov/aboutnci/cis | USA | All aspects of cancer |
| National Organization for Rare Disorders (NORD) | www.rarediseases.org | USA | GIST, ALL, HES/CEL, MDS/MPD, DFSP |
| ORPHANET | www.orpha.net | France | GIST, ALL, HES/CEL, MDS/MPD, DFSP |
| Sarcoma Foundation of America | www.curesarcoma.org | USA | Sarcomas |
| Sarcoma UK | www.sarcoma-uk.org | UK | Sarcomas |
| Sarcoma Alliance | www.sarcomaalliance.com | USA | Sarcomas |
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