Cancer-related Resource Organizations
Type | Organization | Address 1 | Address 2 | City | State | Zipcode | Phone | Website |
Blood | Leukemia & Lymphoma Society | 3 International Dr | Suite 200 | Rye Brook | NY | 10573 | 888-557-7177 | https://www.lls.org |
Bone-related | Bone & Cancer Foundation | PO Box 287452 | New York | NY | 10128 | http://www.boneandcancerfoundation.org | ||
Bone-related | Bone Marrow & Cancer Foundation | 515 Madison Ave | Suite 1130 | New York | NY | 10022 | 212-838-3029 | http://bonemarrow.org |
Brain | American Brain Tumor Association | 8550 W. Bryn Mawr Ave | Suite 550 | Chicago | IL | 60631 | 773-577-8750 | https://www.abta.org |
Brain | Children's Brain Tumor Foundation | 1460 Broadway | New York | NY | 10036 | 866-228-4673 | http://cbtf.org/ | |
Breast | American Breast Cancer Foundation | 10400 Little Pauxent Pkwy | Suite 480 | Columbia | MD | 21044 | 410-730-5105 | www.abcf.org |
Colo-Rectal | Colorectal Cancer Alliance | 1025 Vermont Ave NE | Suite 1066 | Washington | DC | 20005 | 202-628-0123 | https://www.ccalliance.org |
Gene Research | Victory Over Cancer/BRCA Foundation | 14600 Weston Pkwy | PO Box 410806 | San Francisco | CA | 94141 | 415-684-7441 | http://www.brcafoundation.org |
General | American Cancer Society - Buffalo | 101 John James Audobon Pkwy | Buffalo | NY | 14228 | 800-227-2345 | https://www.facebook.com/ACSWNY/ | |
General | American Cancer Society - East Syracuse | 6725 Lyons St | East Syracuse | NY | 13057 | 315-437-7025 | https://www.facebook.com/pages/American-Cancer-Society/205262772842983 | |
General | American Cancer Society - National | 250 Williams St NW | Atlanta | GA | 30303 | 800-227-2345 | https://www.cancer.org | |
General | American Cancer Society - Rochester | 1120 South Goodman St | Rochester | NY | 14620 | 585-288-1950 | https://www.facebook.com/RochesterACS/ | |
General | Cancer Care | 275 Seventh Ave | New York | NY | 10001 | 800-813-4673 | https://www.cancercare.org | |
General | Cancer Hope Network | 2 North Rd | Suite A | Chester | NJ | 07930 | 908-879-4039 | https://www.cancerhopenetwork.org |
General | Cancer Research Institute | 29 Broadway Floor 4 | New York | NY | 10006 | 212-688-7515 | https://www.cancerresearch.org | |
General | Cancer Support Community | 734 15th St NW | Suite 300 | Washington | DC | 20005 | 202-659-9709 | https://www.cancersupportcommunity.org |
General | Gilda's Club of Rochester | 255 Alexander St | Rochester | NY | 14607 | 585-423-9700 | www.gildasclubrochester.org | |
General | National Cancer Institute | 9609 Medical Center Dr | Bethesda | MD | 20892 | 301-496-4345 | https://www.cancer.gov | |
General | National Foundation for Cancer Research | 5515 Security Lane | Suite 1105 | Rockeville | MD | 20852 | 800-321-2873 | https://www.nfcr.org/ |
General | Prevent Cancer Foundation | 1600 Duke St | Suite 500 | Alexandria | VA | 22314 | 703-836-4412 | https://preventcancer.org |
Kidney/Urinary | Bladder Cancer Advocacy Network | 4915 St Elmo Ave | Suite 202 | Bethesda | MD | 20814 | 301-215-9099 | https://www.bcan.org |
Kidney/Urinary | Kidney Cancer Association | 1608 S. Ashland Ave | Chicago | IL | 60608 | 800-850-9132 | https://www.kidneycancer.org/ | |
Lung | Lung Cancer Foundation of America | 15 S. Franklin St | New Ulm | MN | 56073 | 507-354-1361 | https://lcfamerica.org | |
Pancreas | Lustgarten Foundation Pancreatic Cancer Research | 415 Crossways Park Dr | Suite D | Woodbury | NY | 11797 | 516-737-1550 | https://www.lustgarten.org |
Pediatric | National Pediatric Cancer Foundation | 5550 W. Executive Dr | Suite 300 | Tampa | FL | 33069 | 813-269-0955 | https://nationalpcf.org/ |
Prostate | Prostate Cancer Foundation | 1250 Fourth St | Santa Monica | CA | 90401 | 310-570-4700 | https://www.pcf.org | |
Skin | Aim at Melanoma | 5729 Lebanon Rd | Suite 144-305 | Frisco | TX | 75034 | 415-464-7727 | https://www.aimatmelanoma.org |
Skin | Melanoma Research Foundation | 1420 K St. NW | 7th Floor | Washington | DC | 20005 | 202-347-9675 | https://melanoma.org/ |
Skin | Skin Cancer Foundation | 205 Lexington Ave | 11th floor | New York | NY | 10016 | 212-725-5176 | https://www.skincancer.org |
Thyroid | American Thyroid Association | 6066 Leesburg Pike | Suite 550 | Falls Church | VA | 22041 | 703-998-8890 | https://www.thyroid.org/ |
Treatment CenterWilmot Cancer Center | Lipson Cancer Center | 100 Kings Highway South | Rochester | NY | 14617 | 585-922-4000 | https://www.rochesterregional.org/services/cancer | |
Treatment CenterWilmot Cancer Center | Pluta Cancer Center | 125 Red Creek Dr | Rochester | NY | 14623 | 585-486-0600 | https://www.urmc.rochester.edu/cancer-institute/locations/pluta.aspx | |
Treatment CenterWilmot Cancer Center | Roswell Park Cancer Center | Elm & Carlton St | Buffalo | NY | 14263 | 800-767-9355 | https://www.roswellpark.org/ | |
Treatment CenterWilmot Cancer Center | 601 Elmwood Ave | Rochester | NY | 14642 | 585-275-5830 | https://www.urmc.rochester.edu/cancer-institute.aspx | ||
Variable Types | Lynch Syndrome International | PO Box 19 | Madison | CT | https://lynchcancers.com | |||
Variable Types | Meso Foundation (Mesothelioma) | 1615 L Street NW | Suite 430 | Washington | DC | 20036 | 877-363-6376 | https://www.curemeso.org/ |
Variable Types | Sarcoma Foundation of America | PO Box 98160 | Washington | DC | 20090 | 301-253-8687 | https://www.curesarcoma.org |
Congenital/Genetic-related Resource Organizations
Autism | Asperger/Autism Network | 51 Water St | Suite 206 | Watertown | MA | 02472 | 617-393-3824 | http://www.aane.org |
Autism | Golisano Autism Center Rochester | 50 Science Parkway | Rochester | NY | 14620 | 866-288-4764 | https://www.golisanoautismcenter.org | |
Brain | Carter Center for Brain Research (Holoprosencephaly) | 2222 Welborn St | Dallas | TX | 75219 | 214-559-8411 | http://www.hperesearch.org | |
Cerebral Palsy | CP Rochester | 3399 Winton Rd South | Rochester | NY | 14623 | 585-334-6000 | http://www.cprochester.org | |
Cleft Palate | Center for Cleft and Craniofacial Anomalies - Golisano | Box 661 | Rochester | NY | 14610 | 585-275-1000 | https://www.urmc.rochester.edu/childrens-hospital/craniofacial.aspx | |
Cleft Palate | Smile Train | 633 Third Ave | 9th Floor | New York | NY | 10017 | 800-932-9541 | https://www.smiletrain.org/ |
Connective Tissue | National Marfan Foundation | 22 Manhasset Ave | Port Washington | NY | 11050 | 516-883-8712 | https://www.marfan.org | |
Craniofacial | American Cleft Palate Association1504 East Franklin St | Suite 102 | Chapel Hill | NC | 24514 | 919-933-9044 | https://cleftline.org | |
Craniofacial | Children's Craniofacial Association | 13140 Coit Rd | Suite 517 | Dallas | TX | 75240 | 800-535-3643 | https://ccakids.org/ |
Developmental | Developmental Disabilities Alliance of Western NY | 1860 Buffalo Rd | Rochester | NY | 14624 | 716-877-7007 | http://www.ddawny.org/ | |
Developmental | National Fragile X Foundation | 1861 International Dr | Suite 200 | McLean | VA | 22102 | 800-688-8765 | https://fragilex.org |
Developmental | NYS Developmental Disabilities - Finger Lakes | 620 Westfall Rd | Rochester | NY | 14620 | 585-461-8500 | ||
Developmental | NYS Developmental Disabilities - Finger Lakes | 163 Sullivan St | Building 5 | Elmira | NY | 14901 | 607-732-9270 | http://chemung.ny.networkofcare.org/mh/services/agency.aspx?pid=FingerLakesDevelopmentalDisabilitiesServiceOfficeDDSO_207_2_0 |
Developmental | NYS Office for People with Developmental Disabilities | 44 Holland Ave | Albany | NY | 12229 | 866-946-9733 | https://opwdd.ny.gov | |
Developmental | NYS Office for People with Developmental Disabilities - Region 1 | 585-461-8500 | https://opwdd.ny.gov/opwdd_contacts/ddsoo/1 | |||||
Developmental | NYS OPWDD Front Door Access - Finger Lakes | 855-679-3335 | https://opwdd.ny.gov/welcome-front-door/Front_Door_Contact_Numbers | |||||
Developmental | Parent to Parent Of NYS | 500 Balltown Rd | Schnectady | NY | 12304 | 518-381-4350 | http://parenttoparentnys.org/ | |
Developmental | Parent to Parent Of NYS - Finger Lakes | 620 Westfall Rd | c/o Finger Lakes DDSO | Rochester | NY | 14620 | 800-305-8817 | http://parenttoparentnys.org/index.php/offices/finger-lakes/ |
Down Syndrome | Down Syndrome Info Network of the Twin Tiers | 300 Scenic View | Horseheads | NY | 14845 | 607-734-6151 | http://www.downsyndromeintt.org/ | |
Down Syndrome | Flower City Down Syndrome Network | 2117 Buffalo Rd | #132 | Rochester | NY | 14624 | 585-568-7421 | http://www.fcdsn.com/ |
Down Syndrome | National Down Syndrome Society | 8 E 41st St | 8th floor | New York | NY | 10017 | 800-221-4602 | https://www.ndss.org |
Epilepsy | Epilepsy-Pralid | 2 Townline Circle | Rochester | NY | 14623 | 585-442-6420 | https://www.epiny.org | |
General | Al Sigl Community of Agencies | 1000 Elmwood Ave | Suite 300 | Rochester | NY | 14620 | 585-442-4100 | https://www.alsigl.org |
General | Genetic Alliance | 4301 Connecticut Ave NW | Suite 404 | Washington | DC | 20008 | 202-966-5557 | http://www.geneticalliance.org |
General | Mary Cariola Children's Center | 1000 Elmwood Ave | Suite 100 | Rochester | NY | 14620 | 585-271-0761 | https://www.marycariola.org/ |
General | National Newborn Screening & Genetics Resource Center | 3907 Galacia Dr | Austin | TX | 78759 | 512-345-5685 | http://genes-r-us.uthscsa.edu/ | |
General | Prime Care Coordination | 860 Hard Rd | Webster | NY | 14580 | 844-347-3168 | https://primecareny.org/ | |
General | Rochester Rehabilitation Center | 1000 Elmwood Ave | Rochester | NY | 14620 | 585-271-2520 | https://www.rochesterrehab.org | |
General | Starbridge NYS Parent Training & Information Center | 1650 South Ave | Suite 200 | Rochester | NY | 14620 | 585-546-1700 | http://www.starbridgeinc.org |
Genetic | Cystinosis Research Foundation | 19200 Von Karman Ave | Suite 920 | Irvine | CA | 92612 | 949-233-7610 | https://www.cystinosisresearch.org/ |
Genetic - Blood | Fanconi Anemia Research Fund | 1801 Williamette St | Suite 200 | Eugene | OR | 97401 | 888-326-2664 | https://www.fanconi.org |
Genetic - Blood | Sickle Cell Disease Association of America | 7240 Parkway Dr | Suite 180 | Hanover | MD | 21076 | 800-421-8453 | https://www.sicklecelldisease.org |
Genetic - Cancer | Lynch Syndrome International | PO Box 19 | Madison | CT | https://lynchcancers.com | |||
Genetic Disease | Williams Syndrome Association | 570 Kirts Blvd | Suite 223 | Troy | MI | 48084 | 248-244-2229 | https://williams-syndrome.org |
Genetic Disorder | Dysautonomia Foundation | 315 W 39th St | Suite 701 | New York | NY | 10018 | 212-279-1066 | https://familialdysautonomia.org |
Genetic DIsorder | Progeria Research Foundation | PO Box 3453 | 200 Lake St Unit 102 | Peabody | MA | 01961 | 978-535-2594 | https://www.progeriaresearch.org |
Genetic Disorder | Shwachman-Diamond Syndrome Foundation | PO Box 6723 | Florence | KY | 41022 | 888-825-7373 | http://shwachman-diamond.org/ | |
Growth Disorders | Human Growth Foundation | 997 Glencove Ave | Suite 5 | Glencove | NY | 11545 | 800-451-6434 | http://hgfound.org |
Growth Disorders | Little People of America | 617 Broadway #518 | Sonoma | CA | 95476 | 714-368-3689 | https://www.lpaonline.org | |
Hearing/Speech | Rochester Hearing & Speech Center - Brighton | 1000 Elmwood Ave | Suite 400 | Rochester | NY | 14620 | 585-271-0680 | https://www.rhsc.org/home |
Hearing/Speech | Rochester Hearing & Speech Center - Greece | 3199 West Ridge Rd | Rochester | NY | 14626 | 585-723-2140 | https://www.rhsc.org/home | |
Hearing/Speech | Rochester Hearing & Speech Center - Webster | 1170 Ridge Rd | Webster | NY | 14580 | 585-286-9373 | https://www.rhsc.org/home | |
Heart | Children's Heart Association | 5 Revere Dr | Suite 200 | Lincolnshire | IL | 60069 | 847-634-6474 | https://www.childrensheartfoundation.org/ |
Heart | Pediatric Congenital Heart Association | 14 Ellis Potter Court | Suite 100 | Madison | WI | 53711 | 608-370-3739 | https://www.conqueringchd.org/ |
Heart | Pediatric Congenital Heart Association | 14 Ellis Potter Court | Suite 100 | Madison | WI | 63711 | 608-370-3739 | http://conqueringchd.org/ |
Kidney Disorders | Alport Syndrome Foundation | PO Box 4130 | Scottsdale | AZ | 85261 | 480-800-3510 | https://www.alportsyndrome.org | |
Kidney Disorders | Polycystic Kidney Research Foundation | 1001 E 101st Terrace | Suite 220 | Kansas City | MO | 64131 | 800-753-2873 | https://pkdcure.org |
Metabolic | National Gaucher Foundation | 5410 Edson Lane | #220 | Rockville | MD | 20852 | 800-504-3189 | https://www.gaucherdisease.org |
Metabolic | National Niemann-Pick Disease Foundation | PO Box 49 | Fort Atkinson | WI | 53538 | 877-287-3672 | https://nnpdf.org | |
Metabolic | Turner Syndrome Foundation | 1 Bethany Rd | Bldg 1, Suite 6 | Hazlet | NJ | 07730 | 800-594-4585 | https://turnersyndromefoundation.org |
Metabolic | United Mitochondria Disease Foundation | 8085 Saltsburg Rd | Suite 201 | Pittsburgh | PA | 15239 | 412-793-8077 | https://www.umdf.org |
Metabolic Disorder | Prader-Willi Syndrome Association | 8588 Potter Park Dr | Suite 500 | Sarasota | FL | 34238 | 800-926-4797 | https://www.pwsausa.org |
Metabolic Disorders | Maple Syrup Urine Disease | 9517 Big Bear Ave | Powell | OH | 43065 | 740-972-5619 | https://www.msud-support.org | |
Musculoskeletal Disorders | Osteogenesis Imperfecta Foundation | 804 W. Diamond Ave | Suite 210 | Gaithersburg | MD | 20878 | 301-947-0083 | www.oif.org |
Neuromuscular Disorders | Huntington's Disease Society of America | 505 Eighth Ave | Suite 902 | New York | NY | 10018 | 212-242-1968 | https://hdsa.org |
Neuromuscular Disorders | Joubert Syndrome Foundation & Related Disorders | 9 Dorenfeld Court | Petaluma | CT | 94952 | 707-992-5293 | https://jsrdf.org | |
Neuromuscular Disorders | Multiple Sclerosis Society - National | 800-344-4867 | https://www.nationalmssociety.org/ | |||||
Neuromuscular Disorders | Multiple Sclerosis Society - Upstate NY | 1000 Elmwood Ave | Suite 900 | Rochester | NY | 14620 | 585-271-0801 | https://www.nationalmssociety.org/Chapters/NYR |
Neuromuscular Disorders | Muscular Dystrophy Association - Buffalo | UBMD Conventus Bldg | 1001 Main St | Buffalo | NY | 14203 | 716-932-6080 | https://www.mda.org/clinic/university-buffalo |
Neuromuscular Disorders | Muscular Dystrophy Association - National | 161 N. Clark | Suite 3550 | Chicago | IL | 60601 | 800-572-1717 | https://www.mda.org/ |
Neuromuscular Disorders | Muscular Dystrophy Association - Rochester | University of Rochester MDA Clinic | 601 Elmwood Ave | Rochester | NY | 14642 | 585-275-2559 | https://www.urmc.rochester.edu/neurology/our-divisions/neuromuscular/clinics/mdaclinic.aspx |
Neuromuscular Disorders | National Ataxia Foundation | 600 Hwy 169 South | Suite 1725 | Minneapolis | MN | 55426 | 763-553-0020 | http://ataxia.org |
Neuromuscular Disorders | SMA Foundation | 126 East 56th St | 30th Floor | New York | NY | 10022 | 646-253-7100 | http://www.smafoundation.org |
Neuromuscular Disorders | Spina Bifida Association | 1600 Wilson Blvd | Arlington | VA | 22209 | 800-621-3141 | http://spinabifidaassociation.org | |
Skin Disorder | Dystrophic Epidermolysis Bullosa Research Association | 75 Broad St | Suite 300 | New York | NY | 10004 | 212-868-1573 | http://www.debra.org |
Skin Disorder | Foundation for Ichthyosis & Related Skin Types | 2616 North Broad St | Colmar | PA | 18915 | 215-997-9400 | http://www.firstskinfoundation.org | |
Skin Disorder | Incontentia Pigmenti International Foundation | 30 East 72nd St | 16th floor | New York | NY | 10021 | 212-452-1231 | http://www.ipif.org/index.html |
Spina Bifida | Spina Bifida Association | 1600 Wilson Blvd | Suite 800 | Arlington | VA | 22209 | 800-621-3141 | https://www.spinabifidaassociation.org/ |
Variable Types | Association for X and Y Chromosome Variations | PO Box 659 | Paoli | PA | 19301 | 888-999-9428 | https://genetic.org/ | |
Variable Types | Birth Defect Research for Children | 976 Lake Baldwin Lane | Orlando | FL | 32814 | 407-895-0802 | http://www.birthdefects.org | |
Variable Types | Complex Care Center | 905 Culver Rd | Rochester | NY | 14609 | 585-276-7900 | https://www.urmc.rochester.edu/primary-care/practices/complex-care-center.aspx | |
Variable Types | Genetic & Rare Diseases Information Center | PO Box 8126 | Gaithersburg | MD | 20898 | 888-205-2311 | https://rarediseases.info.nih.gov/ | |
Variable Types | Hereditary Disease Foundation | 601 W 168th St | Suite 54 | New York | NY | 10032 | 212-928-2121 | http://www.hdfoundation.org |
Dental- related Resource Organizations
General | American Dental Association | 211 East Chicago Ave | Chicago | IL | 60611 | 312-440-2500 | https://www.ada.org | |
General | American Dental Foundation | 211 East Chicago Ave | Chicago | IL | 60611 | 312-440-2500 | https://www.adafoundation.org | |
General | Eastman Institute for Oral Health | 625 Elmwood Ave | Rochester | NY | 14620 | 585-275-5051 | https://www.urmc.rochester.edu/dentistry.aspx | |
General | NYD Dental Association | 20 Corporate Woods Blvd | Suite 602 | Albany | NY | 12211 | 518-465*0044 | www.nysdental.org |
General | Seventh District Dental Society | 255 Woodcliff Dr | Fairport | NY | 14450 | 585-385-9550 | www.7dds.org |
Diabetes/Endocrine-related Resource Organizations
Adrenal | National Adrenal Diseases Foundation | PO Box 566 | Lake Zurich | IL | 60047 | 847-726-9010 | https://www.nadf.us | |
Diabetes | American Diabetes Association | 2451 Crystal Dr | Suite 900 | Arlington | VA | 22202 | 800-342-2383 | http://www.diabetes.org |
Diabetes | American Diabetes Association - Rochester | 160 Allen Creek Rd | Building 160 | Rochester | NY | 14618 | 585-458-3040 | http://www.diabetes.org |
Diabetes | Juvenile Diabetes Research Foundation | 26 Broadway | 14th floor | New York | NY | 10004 | 800-533-2873 | https://www.jdrf.org |
Diabetes | Juvenile Diabetes Research Foundation - Rochester | 6320 Fly Rd | Suite 104 | E. Syracuse | NY | 13057 | 315-453-9327 | https://www.jdrf.org/cnyroc/ |
Endocrine - Variable | Endocrine Society | 2055 L Street NW | Suite 600 | Washington | DC | 20036 | 888-363-6274 | https://www.endocrine.org |
Endocrine - Variable | Hormone Health Network (Endocrine Society) | 2055 L Street NW | Suite 600 | Washington | DC | 20036 | 800- 467-6663 | https://www.hormone.org |
Growth Disorders | Human Growth Foundation | 997 Glencove Ave | Suite 5 | Glencove | NY | 11545 | 800-451-6434 | http://hgfound.org |
Pituitary | Pituitary Foundation | 86 Colston St | Bristol | United Kingdom | BS1 5BB | 0-117-370-1333 | https://www.pituitary.org.uk | |
Pituitary | Pituitary Society | 8700 Beverly Blvd | Room 2051 | Los Angeles | CA | 90048 | 310-988-9486 | https://www.pituitarysociety.org |
Thyroid | American Thyroid Association | 6066 Leesburg Pike | Suite 550 | Falls Church | VA | 22041 | 703-998-8890 | https://www.thyroid.org |
Neurologic-related Resource Organizations
ALS | ALS Association | 1275 K Street NW | Suite 250 | Washington | DC | 20005 | 202-407-8580 | http://www.alsa.org |
Alzheimer | Alzheimer Foundation of America | 322 Eighth Ave | 16th Floor | New York | NY | 10001 | 866-232-8484 | https://alzfdn.org/ |
Alzheimer | Alzheimer's Association | 225 N. Michagan Ave | Floor 17 | Chicago | IL | 60601 | 800-272-3900 | https://www.alz.org |
Alzheimer | Alzheimer's Association - Rochester | 435 E.HeRdnrietta | Rochester | NY | 14620 | 585-760-5400 | https://www.alz.org/rochesterny?set=1 | |
Dementia | Association for Fronterotemporal Degeneration | 290 King of Prussia Rd | Radnor Station Bldg 2 Suite 320 | Radnor | PA | 19087 | 866-507-7222 | https://www.theaftd.org/ |
Dementia | Dementia Society of America | PO Box 600 | Doylestown | PA | 18901 | 800-336-3684 | https://www.dementiasociety.org | |
Dementia | Lewy Body Dementia Association | 912 Killian Hill Rd SW | Lilburn | GA | 30047 | 404-935-6444 | https://www.lbda.org/ | |
Epilepsy | Epilepsy-Pralid | 2 Townline Circle | Rochester | NY | 14623 | 585-442-6420 | https://www.epiny.org | |
Epilepsy | Epilepsy Foundation | 8301 Professional Place West | Suite 230 | Landover | MD | 20785 | 800-332-1000 | https://www.epilepsy.com/ |
General | American Brain Foundation | 201 Chicago Ave | Minneapolis | MN | 55415 | 866-770-7570 | https://www.americanbrainfoundation.org | |
General | American Neurological Association | 1120 Route 73 | Suite 200 | Mount Laurel | NJ | 08054 | 856-638-0423 | https://myana.org |
General | Brain Research Foundation | 111 West Washington St | Suite 1460 | Chicago | IL | 60602 | 312-759-5150 | https://www.thebrf.org |
General | Dana Foundation | 505 Fifth Ave | 6th Floor | New York | NY | 10017 | 212-223-4040 | http://dana.org |
General | Foundation for Neurologic Diseases | 10 State St | Newburyport | MA | 01950 | 978-465-0008 | http://www.fndboston.org | |
General | Institute for Neurodegenerative Disorders | 60 Temple St | 8th Floor | New Haven | CT | 06510 | 203-401-4300 | https://www.indd.org/resources.htm |
General | National Institute of Neurological Disorders & Stroke | 6001 Executive Blvd | PO Box 5801 | Rockville | MD | 20852 | 800-352-9424 | www.ninds.nih.gov |
Huntington's Disease | Huntington's Disease Society of America | 505 Eighth Ave | Suite 902 | New York | NY | 10018 | 800-345-4372 | https://hdsa.org/ |
Multiple Sclerosis | Multiple Sclerosis Foundation | 6520 North Andrews Ave | Fort Lauderdale | FL | 33309 | 888-673-6287 | https://msfocus.org | |
Multiple Sclerosis | National Multiple Sclerosis Society | PO Box 4527 | New York | NY | 10163 | 800-344-4867 | https://www.nationalmssociety.org | |
Multiple Sclerosis | National Multiple Sclerosis Society - Upstate NY | 1000 Elmwood Ave | Suite 900 | Rochester | NY | 14620 | 585-271-0801 | https://www.nationalmssociety.org/Chapters/NYR |
Parkinson's Disease | Parkinson's Foundation - NY | 1359 Broadway | Suite 1509 | New York | NY | 10018 | 800-473-4636 | https://www.parkinson.org/understanding-parkinsons |
Heart-Vascular-related Resource Organizations
Heart | American Heart Association | 7272 Greenville Ave | Dallas | TX | 75231 | 800-242-8721 | https://www.heart.org | |
Heart | American Heart Association - Rochester | 25 Circle St | Suite 102 | Rochester | NY | 14607 | 585-371-3227 | https://www.heart.org/en/affiliates/new-york/rochester |
Heart | Children's Heart Association | 5 Revere Dr | Suite 200 | Lincolnshire | IL | 60069 | 847-634-6474 | https://www.childrensheartfoundation.org/ |
Heart | Pediatric Congenital Heart Association | 14 Ellis Potter Court | Suite 100 | Madison | WI | 63711 | 608-370-3739 | http://conqueringchd.org/ |
Heart Transplant | Strong Memorial Hospital Ambulatory Care - Cardiology | 601 Elmwood Ave | Rochester | NY | 14642 | 585-273-3760 | https://www.urmc.rochester.edu/transplant/heart.aspx | |
Stroke | American Stroke Association | 7272 Greenville Ave | Dallas | TX | 75231 | 800-242-8721 | https://www.heart.org | |
Vascular Disorders | Vascular Cures | 274 Redwood Shores Pkwy | #717 | Redwood City | CA | 94065 | 650-368-6022 | https://vascularcures.org/ |
Infectious Disease-related Resource Organizations
Heart | American Heart Association | 7272 Greenville Ave | Dallas | TX | 75231 | 800-242-8721 | https://www.heart.org | |
Heart | American Heart Association - Rochester | 25 Circle St | Suite 102 | Rochester | NY | 14607 | 585-371-3227 | https://www.heart.org/en/affiliates/new-york/rochester |
Heart | Children's Heart Association | 5 Revere Dr | Suite 200 | Lincolnshire | IL | 60069 | 847-634-6474 | https://www.childrensheartfoundation.org/ |
Heart | Pediatric Congenital Heart Association | 14 Ellis Potter Court | Suite 100 | Madison | WI | 63711 | 608-370-3739 | http://conqueringchd.org/ |
Heart Transplant | Strong Memorial Hospital Ambulatory Care - Cardiology | 601 Elmwood Ave | Rochester | NY | 14642 | 585-273-3760 | https://www.urmc.rochester.edu/transplant/heart.aspx | |
Stroke | American Stroke Association | 7272 Greenville Ave | Dallas | TX | 75231 | 800-242-8721 | https://www.heart.org | |
Vascular Disorders | Vascular Cures | 274 Redwood Shores Pkwy | #717 | Redwood City | CA | 94065 | 650-368-6022 | https://vascularcures.org/ |
Kidney/Urinary Tract Disease-related Resource Organizations
Alport Syndrome | Alport Syndrome Foundation | PO Box 4130 | Scottsdale | AZ | 85261 | 480-800-3510 | https://www.alportsyndrome.org | |
General | American Association of Kidney Patients | 14440 Bruce Downs Blvd | Tampa | FL | 33613 | 800-749-2257 | https://aakp.org | |
General | American Kidney Fund | 11921 Rockville Pike | Suite 300 | Rockville | MD | 20852 | 800-638-8299 | http://www.akfinc.org |
Transplant | American Society for Artifical Internal Organs | 7700 Congress Ave | Suite 3107 | Boca Raton | FL | 33487 | 561-999-8969 | https://asaio.com |
Transplant | American Society of Transplantation | 1120 Route 73 | Suite 200 | Mt Laurel | NJ | 08054 | 856-439-9986 | https://www.myast.org |
Dialysis | Dialysis Patient Citizens | 1012 14th St NW | Suite 1475 | Washington | DC | 20005 | 866-877-4242 | http://www.dialysispatients.org |
General | National Kidney Foundation | 30 East 33rd St | New York | NY | 10016 | 800-622-9010 | https://www.kidney.org | |
Polycystic Kidney | Polycystic Kidney Research Foundation | 1001 E 101st Terrace | Suite 220 | Kansas City | MO | 64131 | 800-753-2873 | https://pkdcure.org |
General | Renal Support Network | 1146 N. Central Ave | #121 | Glendale | CA | 92102 | 818-543-0896 | |
Dialysis Center | Rochester Regional Health - Seneca Ridge | 370 Ridge Road East | Rochester | NY | 14621 | 585-922-0300 | https://www.rochesterregional.org/locations?service=Dialysis&q&sortBy=relevance&sortOrder=asc&page=1 | |
Dialysis Center | Rochester Regional Health - Bay Creek | 2010 Empire Blvd | Webster | NY | 14580 | 585-922-0300 | https://www.rochesterregional.org/locations?service=Dialysis&q&sortBy=relevance&sortOrder=asc&page=1 | |
Dialysis Center | Rochester Regional Health - Spencerport | 4 Land Re Way | Spencerport | NY | 14559 | 585-368-6610 | https://www.rochesterregional.org/locations?service=Dialysis&q&sortBy=relevance&sortOrder=asc&page=1 | |
Dialysis Center | McCormick Transitional Care Center | 1555 Long Pond Road | Rochester | NY | 14626 | 585-368-6565 | https://www.rochesterregional.org/locations?service=Dialysis&q&sortBy=relevance&sortOrder=asc&page=1 | |
Dialysis Center | Andrew J. Kirch Dialysis Center - Park Ridge | 1555 Long Pond Road | Rochester | NY | 14626 | 585-723-7760 | https://www.rochesterregional.org/locations?service=Dialysis&q&sortBy=relevance&sortOrder=asc&page=1 | |
Dialysis Center | Andrew J. Kirch Dialysis Center - St Mary's | 89 Genesee St | Rochester | NY | 14611 | 585-368-3934 | https://www.rochesterregional.org/locations?service=Dialysis&q&sortBy=relevance&sortOrder=asc&page=1 | |
Dialysis Center | Rochester Regional Health - Chili | 3379 Chili Ave | Rochester | NY | 14559 | 585-723-7000 | https://www.rochesterregional.org/locations?service=Dialysis&q&sortBy=relevance&sortOrder=asc&page=1 | |
Dialysis Center | Fresenius - Clinton Crossings (Univ of Rochester) | 2400 South Clinton Ave | Bldg F | Rochester | NY | 14618 | 585-461-0770 | https://www.freseniuskidneycare.com/dialysis-centers/new-york/2912 |
Dialysis Center | Strong Health Dialysis - Noyes | 4616 Millennium Dr | Geneseo | NY | 14454 | 585-991-5015 | https://www.urmc.rochester.edu/noyes/healthcare-services/dialysis-center.aspx | |
Dialysis Center | Fresenius - Freedom Center | 100 Meridian Centre Blvd | Suite 130 | Rochester | NY | 14618 | 585-241-9783 | https://www.freseniuskidneycare.com/dialysis-centers/new-york/9254 |
Dialysis Center | Fresenius - Monroe Community | 435 E. Henrietta Rd | Rochester | NY | 14620 | 585-292-0076 | https://www.freseniuskidneycare.com/dialysis-centers/new-york/6073 | |
Dialysis Center | Fresenius - Strong Memorial Hemo Program | 1208 Scottsville Rd | Rochester | NY | 14624 | 585-235-4336 | https://www.freseniuskidneycare.com/dialysis-centers/new-york/2916 | |
Dialysis Center | Rochester Regional Health - Home Dialysis Center | 370 E. Ridge Rd | Suite 30 | Rochester | NY | 14621 | 585-922-0339 | https://www.rochesterregional.org/services/dialysis/home-dialysis |
Dialysis Center | Strong Memorial Hospital Ambulatory Care - Nephrology | 601 Elmwood Ave | Rochester | NY | 14642 | 585-275-4517 | https://www.urmc.rochester.edu/medicine/nephrology/patient-care/treatments-procedures/dialysis.aspx | |
Kidney Transplant | Strong Memorial Hospital Ambulatory Care - Nephrology | 601 Elmwood Ave | Rochester | NY | 14642 | 585-275-7753 | https://www.urmc.rochester.edu/transplant/kidney.aspx |
Mental Health/Addiction-related Organizations
ADD | Attention Deficit Disorder Association | PO Box 103 | Denver | PA | 17517 | 800-939-1019 | https://add.org/ | |
Addiction | Association for Addiction Professionals | 44 Canal Center Plaza | Suite 301 | Alexandria | VA | 22314 | 800-585-0497 | https://www.naadac.org/ |
Alcohol/Substance Abuse | Canandaigua Behavioral Health | 35 North St | Canandaigua | NY | 14424 | 585-922-9900 | https://www.rochesterregional.org/locations/canandaigua/canandaigua-behavioral-health-clinic | |
Alcohol/Substance Abuse | Canandaigua VA Medical Center | 400 Fort Hill Ave | Bldg 9 | Canandaigua | NY | 14424 | 585-394-2000 | https://www.canandaigua.va.gov/services/Substance_Abuse.asp |
Alcohol/Substance Abuse | Clifton Springs Behavioral Health | 2 Coulter Rd | Clifton Springs | NY | 14432 | 585-922-9900 | https://www.rochesterregional.org/locations/clifton-springs/clifton-springs-behavioral-health-clinic | |
Alcohol/Substance Abuse | Council on Alcoholism & Addictions of the Finger Lakes - Ontario | 620 W. Washington St | Geneva | NY | 14456 | 315-789-0310 | https://councilonalcoholismfingerlakes.org/ | |
Alcohol/Substance Abuse | Council on Alcoholism & Addictions of the Finger Lakes - Schuyler | 106 South Perry St | Watkins Glen | NY | 14891 | 607-535-8264 | https://councilonalcoholismfingerlakes.org/ | |
Alcohol/Substance Abuse | Council on Alcoholism & Addictions of the Finger Lakes - Seneca | 111 Falls St | Seneca Falls | NY | 13148 | 315-568-1890 | https://councilonalcoholismfingerlakes.org/ | |
Alcohol/Substance Abuse | Council on Alcoholism & Addictions of the Finger Lakes - Wayne | 12 Williams St | Lyons | NY | 14489 | 315-871-4006 | https://councilonalcoholismfingerlakes.org/ | |
Alcohol/Substance Abuse | Council on Alcoholism & Addictions of the Finger Lakes - Yates | 112 Main St | Penn Yan | NY | 14527 | 315-536-2435 | https://councilonalcoholismfingerlakes.org/ | |
Alcohol/Substance Abuse | East Ridge Road Behavioral Health | 490 East Ridge Rd | Rochester | NY | 14621 | 585-922-2500 | https://www.rochesterregional.org/locations/rochester/rochester-behavioral-health-network | |
Alcohol/Substance Abuse | Evelyn Brandon Chemical Dependency Clinic | 81 Lake Ave | Rochester | NY | 14606 | 585-922-9900 | https://www.rochesterregional.org/locations/rochester/evelyn-brandon-health-center-chemical-dependency-clinic | |
Alcohol/Substance Abuse | Genesee Behavioral Health Center | 224 Alexander St | Rochester | NY | 14607 | 585-922-9900 | https://www.rochesterregional.org/locations/rochester/genesee-mental-health-center-gmhc-child-clinic | |
Alcohol/Substance Abuse | Genesee/Orleans Council on Alcoholism & Substance Abuse | 430 East Main St | Batavia | NY | 14020 | 585-343-1124 | https://gcasa.net/ | |
Alcohol/Substance Abuse | Greece Behavioral Health Center - Outpatient Chemical Dependency | 1565 Long Pond Rd | Rochester | NY | 14624 | 585-922-9900 | https://www.rochesterregional.org/locations/greece/greece-chemical-dependency-clinic | |
Alcohol/Substance Abuse | Hope Haven Center | 16 Bank St | 2nd Floor | Batavia | NY | 14020 | 585-344-5396 | https://www.rochesterregional.org/locations/batavia/hope-haven-center |
Alcohol/Substance Abuse | John L Norris Addiction Treatment Center | 1732 South Ave | Rochester | NY | 14620 | 585-461-0410 | https://www.monroecounty.gov/health_providers/ | |
Alcohol/Substance Abuse | National Council on Alcoholism & Drug Dependence | 217 Broadway | Suite 712 | New York | NY | 10057 | 212-269-7797 | |
Alcohol/Substance Abuse | National Council on Alcoholism & Drug Dependence - Rochester | 1931 Buffalo Rd | Rochester | NY | 14624 | 585-719-3481 | https://ncadd-ra.org/ | |
Alcohol/Substance Abuse | NYS Office of Alcoholism & Substance Abuse Services | 1450 Western Ave | Albany | NY | 12203 | 518-457-8299 | https://oasas.ny.gov/ | |
Alcohol/Substance Abuse | Outreach Community Center | 447 Genesee At | Rochester | NY | 14606 | 585-328-0887 | http://www.outreachcommunitycenter.com | |
Alcohol/Substance Abuse | Pathways - Rochester | 435 E. Henrietta Rd | Rochester | NY | 14620 | 585-424-6580 | https://www.chsbuffalo.org/locations/pathways-rochester | |
Alcohol/Substance Abuse | Rochester Calkins VA Clinic | 260 Calkins Rd | Rochester | NY | 14623 | 585-463-2600 | https://www.va.gov/directory/guide/facility.asp?ID=24 | |
Alcohol/Substance Abuse | Rochester Westfall VA Clinic | 465 Westfall Rd | Rochester | NY | 14620 | 585-463-2600 | https://www.va.gov/find-locations/facility/vha_528GE | |
Alcohol/Substance Abuse | Strong Recovery Outpatient Chemical Dependency Services | 601 Elmwood Ave | Rochester | NY | 14627 | 585-275-5400 | https://www.urmc.rochester.edu/mental-health-wellness/addiction-services.aspx | |
Alcohol/Substance Abuse | Unity Walk-In-Care Center | 89 Genesee St | Rochester | NY | 14611 | 585-368-3050 | https://www.rochesterregional.org/locations/rochester/unity-walkin-care-center | |
Alcohol-Related | Alcoholics Anonymous | 475 Riverside Dr | 11th Floor | New York | NY | 10115 | 212-870-3400 | https://www.aa.org/ |
Alcohol-Related | Alcoholics Anonymous - Rochester | 1000 Elmwood Ave | Rochester | NY | 14620 | 585-232-6720 | https://www.rochester-ny-aa.org/ | |
Alcohol-Related | Alcoholics Anonymous of the Finger Lakes | PO Box 707 | Geneva | NY | 14456 | 315-789-5955 | http://fingerlakesaa.org/ | |
Alcohol-Related | Foundation for Alcohol Research | 1200-C Agora Dr | Bel Air | MD | 21401 | 800-688-7152 | https://www.abmrf.org/ | |
Anxiety/Depression | Anxiety & Depression Association of America | 8701 Georgia Ave | Suite 412 | Silver Spring | MD | 20910 | 240-485-1001 | https://adaa.org |
Bipolar | International Bipolar Foundation | 8775 Aero Dr | Suite 330 | San Diego | CA | 92123 | 858-598-5967 | http://ibpf.org/ |
Child/Adolescent | American Association of Child & Adolescent Psychiatry | 3615 Wisconsin Ave NW | Washington | DC | 20016 | 202-966-7300 | https://www.aacap.org | |
Child/Adolescent | University of Rochester Outpatient Mental Health - child/adolescent | 601 Elmwood Ave | Rochester | NY | 14627 | 585-279-7800 | https://www.urmc.rochester.edu/mental-health-wellness/child-adolescent-services.aspx | |
Eating Disorders | National Eating Disorders Association | 1500 Broadway | Suite 1101 | New York | NY | 10036 | 800-931-2237 | https://www.nationaleatingdisorders.org |
General | Brain & Behavior Research Foundation | 747 Third Ave | 33rd floor | New York | NY | 10017 | 800-829-8289 | https://www.bbrfoundation.org |
PTSD | Post-Traumatic Stress Syndrome Foundation of America | 9724 Derrington Rd | Houston | TX | 77064 | 877-717-7873 | https://ptsdusa.org | |
Schizophrenia | Schizophrenia & Related Disorders Alliance of America | 2308 Mount Vernon Ave | Suite 207 | Alexandria | VA | 22301 | 800-493-2094 | https://sardaa.org |
Variable Services | DePaul | 1931 Buffalo Rd | Rochester | NY | 14624 | 585-426-8000 | https://www.depaul.org/ | |
Variable Services | University of Rochester Outpatient Mental Health Services - adult | 601 Elmwood Ave | Rochester | NY | 14627 | 585-273-5050 | https://www.urmc.rochester.edu/mental-health-wellness/adult-services/outpatient.aspx |
Other Medical Problem-related Organizations
LGBT Health | National Coalition for LGBT Health | 2000 South St NW | Washington | DC | 20009 | 202-232-6749 | https://healthlgbt.org/ | |
LGBT Health | Rochester PFLAG | 585-993-3297 | https://rochesterpflag.wixsite.com/rochester-pflag | |||||
LGBT Health | PFLAG | 1828 L St NW | Suite 660 | Washington | DC | 20036 | 202-467-8180 | https://pflag.org/ |
Lung/Respiratory | American Lung Association | 55 W.Wacker Dr | Suite 1150 | Chicago | IL | 60601 | 800-586-4872 | https://www.lung.org |
Lung/Respiratory | American Lung Association - Rochester | 1595 Elmwood Ave | Rochester | NY | 14620 | 585-442-4260 | https://www.lung.org/local-content/_content-items/about-us/local-associations-office/New-York-Rochester.html | |
Lung/Respiratory | American Thoracic Society | 25 Broadway | New York | NY | 10004 | 212-315-8600 | www.thoracic.org | |
Lung/Respiratory | COPD Foundation | 3300 Ponce de Leon Blvd | Miami | FL | 33134 | 866-731-2673 | https://www.copdfoundation.org/ | |
Lung/Respiratory | Pulmonary Fibrosis Foundation | 230 East Ohio St | Suite 500 | Chicago | IL | 60611 | 888-733-6741 | https://www.pulmonaryfibrosis.org |
Musculoskeletal | Arthritis Foundation | 1355 Peachtree St NE | Suite 600 | Atlanta | GA | 30309 | 404-872-7100 | https://www.arthritis.org/ |
Musculoskeletal | Fibrous Dysplasia Foundation | 2885 Sanford Ave SW | #40754 | Grandville | MI | 49418 | 855-742-8179 | https://fibrousdysplasia.org/ |
Musculoskeletal | Musculoskeletal Transplant Foundation | 125 May St | Edison | NJ | 08837 | 800-946-9008 | https://www.mtfbiologics.org/ | |
Musculoskeletal | National Bone Health Alliance | 251 18th St | Suite 630 | Arlington | VA | 22202 | 855-742-8179 | http://www.nbha.org/ |
Musculoskeletal | National Institute of Arthritis & Musculoskeletal & Skin Diseases | 9000 Rockville Pike | Bethesda | MD | 20892 | 877-226-4267 | https://www.niams.nih.gov | |
Musculoskeletal | National Osteoporosis Foundation | 251 18th St South | Suite 630 | Arlington | VA | 22202 | 800-231-4222 | https://www.nof.org/ |
Musculoskeletal | Osteogenesis Imperfecta Foundation | 804 W. Diamond Ave | Suite 210 | Gaithersburg | MD | 20878 | 301-947-0083 | www.oif.org |