{"slug":"patient-org","tag":"patient-org","variants":["patient-org"],"description":"Patient organisations and charities recorded as collections.","count":28,"kinds":{"collection":28},"related":[{"slug":"free","tag":"free","shared":14},{"slug":"helpline","tag":"helpline","shared":3},{"slug":"paediatric","tag":"paediatric","shared":2},{"slug":"patient","tag":"patient","shared":2},{"slug":"source","tag":"source","shared":2},{"slug":"patient-programme","tag":"patient-programme","shared":1}],"records":[{"id":"american-cancer-society","kind":"collection","name":"American Cancer Society (ACS)","route":"/collections/american-cancer-society/","tldr":"The American Cancer Society is the largest US cancer charity. It publishes the annual US cancer statistics that most news reports quote, screening recommendations that differ from the US Preventive Services Task Force in places (colorectal screening from 45, for example), and plain-language patient guides for every cancer."},{"id":"leukemia-lymphoma-society","kind":"collection","name":"Leukemia & Lymphoma Society (LLS)","route":"/collections/leukemia-lymphoma-society/","tldr":"The Leukemia & Lymphoma Society is the main US blood-cancer charity, unusual for running its own precision-medicine trials (Beat AML, PedAL) and investing directly in biotech, alongside co-pay assistance and one-to-one information specialists."},{"id":"pancan","kind":"collection","name":"Pancreatic Cancer Action Network (PanCAN)","route":"/collections/pancan/","tldr":"PanCAN is the leading pancreatic cancer patient organisation; it pioneered free tumour molecular profiling for patients (Know Your Tumor) and runs an adaptive platform trial for a disease with few options."},{"id":"mmrf","kind":"collection","name":"Multiple Myeloma Research Foundation (MMRF)","route":"/collections/mmrf/","tldr":"The Multiple Myeloma Research Foundation, founded by a patient in 1998, built CoMMpass, the largest open longitudinal genomic dataset in myeloma with 1,143 patients followed for over eight years, and helped fund early trials of bortezomib, lenalidomide, daratumumab and CAR-T. It also runs patient navigation and an immunotherapy hub."},{"id":"lymphoma-research-foundation","kind":"collection","name":"Lymphoma Research Foundation (LRF)","route":"/collections/lymphoma-research-foundation/","tldr":"The Lymphoma Research Foundation is the largest US lymphoma-specific charity, with plain-language guides for over 20 lymphoma subtypes and a research programme focused on mantle cell and adolescent/young adult lymphoma."},{"id":"national-brain-tumor-society","kind":"collection","name":"National Brain Tumor Society (NBTS)","route":"/collections/national-brain-tumor-society/","tldr":"The National Brain Tumor Society is the largest US brain tumour nonprofit. It co-founded GBM AGILE, the adaptive platform trial that has enrolled more than 1,500 glioblastoma patients across several drug arms at once, funds research collaboratives, and lobbies the FDA on endpoints for brain tumours."},{"id":"alexs-lemonade-stand","kind":"collection","name":"Alex's Lemonade Stand Foundation (ALSF)","route":"/collections/alexs-lemonade-stand/","tldr":"A childhood-cancer charity started by a four-year-old patient's lemonade stand that now funds hundreds of grants and runs an open-science data lab for paediatric cancer genomics."},{"id":"st-baldricks","kind":"collection","name":"St. Baldrick's Foundation","route":"/collections/st-baldricks/","tldr":"A head-shaving fundraiser that became the largest charitable funder of children's cancer research in the US, underwriting much of the cooperative-group trial infrastructure that treats most American children with cancer."},{"id":"colorectal-cancer-alliance","kind":"collection","name":"Colorectal Cancer Alliance","route":"/collections/colorectal-cancer-alliance/","tldr":"The Colorectal Cancer Alliance is the largest US colorectal cancer patient organisation, focused on screening uptake from age 45, young-onset disease and connecting patients with biomarker-matched trials."},{"id":"lungevity","kind":"collection","name":"LUNGevity Foundation (and GO2 for Lung Cancer)","route":"/collections/lungevity/","tldr":"LUNGevity is the largest US lung cancer charity, focused on making sure every patient gets comprehensive biomarker testing and access to targeted therapy and trials, with a screening-advocacy partner in GO2."},{"id":"melanoma-research-alliance","kind":"collection","name":"Melanoma Research Alliance (MRA)","route":"/collections/melanoma-research-alliance/","tldr":"A melanoma research funder created in 2007 by the Milken family that backed early immunotherapy and targeted-therapy work and now focuses on rare melanoma subtypes and resistance."},{"id":"ovarian-cancer-research-alliance","kind":"collection","name":"Ovarian Cancer Research Alliance (OCRA)","route":"/collections/ovarian-cancer-research-alliance/","tldr":"The Ovarian Cancer Research Alliance is the largest US ovarian cancer organisation, born from the merger of research and patient-support charities; it funds research and campaigns for universal genetic testing and prevention by salpingectomy given that screening does not work."},{"id":"susan-g-komen","kind":"collection","name":"Susan G. Komen","route":"/collections/susan-g-komen/","tldr":"Susan G. Komen is the best-known breast cancer charity, founded in 1982. It has granted more than $1 billion for research, including early support for HER2-directed therapy, runs a helpline and treatment assistance programme, and holds ShareForCures, a patient-consented registry that shares data for metastatic breast cancer research."},{"id":"prostate-cancer-foundation","kind":"collection","name":"Prostate Cancer Foundation (PCF)","route":"/collections/prostate-cancer-foundation/","tldr":"Michael Milken's prostate cancer foundation, which funded the science behind abiraterone, enzalutamide and PSMA therapy and runs a precision-oncology network in US veterans' hospitals."},{"id":"cancercare","kind":"collection","name":"CancerCare","route":"/collections/cancercare/","tldr":"CancerCare's oncology social workers give free counselling and support groups by phone and online to anyone in the US affected by cancer."},{"id":"cancer-support-community","kind":"collection","name":"Cancer Support Community","route":"/collections/cancer-support-community/","tldr":"The Cancer Support Community runs a free helpline and dozens of local centres, including Gilda's Clubs, where anyone with cancer can join free groups and classes."},{"id":"breast-cancer-now-helpline","kind":"collection","name":"Breast Cancer Now helpline","route":"/collections/breast-cancer-now-helpline/","tldr":"Breast Cancer Now's nurses answer 0808 800 6000 free, and the charity runs free courses and peer support for people finishing breast cancer treatment in the UK."},{"id":"young-lives-vs-cancer","kind":"collection","name":"Young Lives vs Cancer","route":"/collections/young-lives-vs-cancer/","tldr":"Young Lives vs Cancer gives families of children and young people with cancer a free place to stay near the hospital and a social worker on the ward."},{"id":"force-facing-our-risk","kind":"collection","name":"FORCE: Facing Our Risk of Cancer Empowered","route":"/collections/force-facing-our-risk/","tldr":"FORCE gives free information, a helpline and peer navigators to anyone facing an inherited cancer risk such as a BRCA or Lynch syndrome gene change."},{"id":"sharsheret","kind":"collection","name":"Sharsheret","route":"/collections/sharsheret/","tldr":"Sharsheret offers Jewish women free access to genetic counsellors, peer supporters and social workers for breast and ovarian cancer and inherited risk."},{"id":"maggies-centres","kind":"collection","name":"Maggie's","route":"/collections/maggies-centres/","tldr":"Maggie's centres sit next to NHS cancer hospitals and anyone can walk in, free, for support, benefits advice or a cup of tea."},{"id":"penny-brohn-uk","kind":"collection","name":"Penny Brohn UK","route":"/collections/penny-brohn-uk/","tldr":"Penny Brohn UK runs free courses and sessions on living well with cancer, in person in Bristol and online across the UK."},{"id":"imerman-angels","kind":"collection","name":"Imerman Angels","route":"/collections/imerman-angels/","tldr":"Imerman Angels matches you free with someone who has been through the same cancer, so you can talk to a person who understands."},{"id":"first-descents","kind":"collection","name":"First Descents","route":"/collections/first-descents/","tldr":"First Descents takes young adults with cancer on free week-long outdoor adventures, with the travel paid for too."},{"id":"kesem","kind":"collection","name":"Kesem","route":"/collections/kesem/","tldr":"Kesem runs free summer camps for children whose mum or dad has cancer, staffed by college student volunteers across the US."},{"id":"little-princess-trust","kind":"collection","name":"The Little Princess Trust","route":"/collections/little-princess-trust/","tldr":"The Little Princess Trust gives free real-hair wigs to children and young people up to 24 who lose their hair to cancer treatment."},{"id":"knitted-knockers","kind":"collection","name":"Knitted Knockers","route":"/collections/knitted-knockers/","tldr":"Knitted Knockers posts free soft knitted breast prostheses to anyone who has had breast surgery, made by volunteer knitters."},{"id":"wigs-for-kids","kind":"collection","name":"Wigs for Kids","route":"/collections/wigs-for-kids/","tldr":"Wigs for Kids gives children in the US who lose their hair to cancer treatment a free custom-made hairpiece."}]}