Disease Organizations; Patient Support and Education

Acoustic Neuroma Assocation
600 Peachtree Pkwy, Suite 108
Cumming, GA. 30041-6899
(770) 205-8211
E-mail: ANAusa@aol.com
www.anausa.org

The Alexander Trust
The Trust encourages and promotes the freedom of information between families who wish to learn more about their own special needs children. Web site includes information on the Dolphin Assisted Therapy program.
14 Ashford Rd., Moorfields, Bath, Somerset BA2 2DH
www.thealexandertrust.com

Allergy & Asthmatics Network: Mothers of Asthmatics, Inc.
2751 Prosperity Ave., Suite 150
Fairfax, VA. 22031
800-878-4403
www.aanma.org

ALS Association (ALSA)
National not-for-profit voluntary health organization dedicated solely to the fight against amyotrophic lateral sclerosis (often called Lou Gehrig's disease.) The mission of The ALS Association is to find a cure for and improve living with ALS
27001 Agoura Road, Suite 150
Calabasas Hills, CA. 91301-5104
888-949-2577
www.alsa.org

Alzheimer's Disease Education and Referral Center (ADEAR)
PO Box 8250
Silver Spring, MD. 20907-8250
800-438-4380
www.alzheimers.org

American Academy of Allergy, Asthma & Immunology
611 East Wells Street
Milwaukee, WI. 53202
(414) 272-6071
Patient Information and Physician Referral Line: 1-800-822-2762
E-mail info@aaaai.org
www.aaaai.org

American Association of Kidney Patients (AAKP)
3505 E. Frontage Road
Tampa, FL. 33607
800-749-2257
www.aakp.org

American Association of Multiple Enchondroma Diseases
Resource for news and information about bone tumor diseases, research and services for adults and children with Enchondromatosis, Multiple Enchondroma, Ollier's disease, Maffucci's syndrome, and their families.
357 Redwood Road
Venice, FL. 34293
(941) 492-5117
http://www.aamed.net/index2.html

American Association for Klinefelter Syndrome Information and Support (AAKSIS)
Non-profit, volunteer organization dedicated to the XXY/Klinefelter Syndrome community
888-466-KSIS(5747)
E-Mail: xxyinfo@aaksis.org
www.AAKSIS.org

American Behcet's Disease Association
Non-profit helping people with Behcet's Disease and providing them with information and support
PO Box 15247
Chattanooga, TN. 37415-0240
1-800-7BEHCETS
www.behcets.com/resources.ivnu

American Brain Tumor Association
2720 River Road
Des Plaines, IL. 60018
(847) 827-9910
www.abta.org

American Chronic Pain Association
PO Box 850
Rocklin, CA. 95677
(916) 632-0922
www.theacpa.org

American Diabetes Association
Nonprofit health organization providing diabetes research, information and advocacy. The mission of the organization is to prevent and cure diabetes and to improve the lives of all people affected by diabetes
1701 North Beauregard Street
Alexandria, VA. 22311
1-800-DIABETES (1-800-342-2383)
www.diabetes.org

American Foundation for AIDS Research
120 Wall Street, 13th Floor
New York, NY. 10005-3902
(212) 806-1600
www.amfar.org/cgi-bin/iowa/index.html

American Foundation of Thyroid Patients
18534 N. Lyford
Katy, TX. 77449 USA
(281) 855-6608
www.thyroidfoundation.org

American Health Assistance Foundation (AHAF)
501(c)(3) nonprofit charitable organization that has dedicated over 30 years to funding research on age-related and degenerative diseases, educating the public about these diseases, and providing emergency financial assistance to Alzheimer's disease patients and their caregivers.
22512 Gateway Center Drive
Clarksburg, MD. 20871
1-800-437-2423
Fax: (301) 258-9454

AHAF's National Glaucoma Research (NGR) program was established in 1978 to fund research on and educate the public about glaucoma.
www.ahaf.org/glaucoma/about/glabout.htm
Ask an Expert about Glaucoma www.ahaf.org/glaucoma/about/gl_ask_scientist.htm

AHAF's Macular Degeneration Research program was established in 1997 to fund research on and educate the public about macular degeneration.
www.ahaf.org/macular/about/maabout.htm
As an Expert about Macular Degeneration www.ahaf.org/macular/about/ma_ask_scientist.htm

American Liver Foundation
75 Maiden Lane, Suite 603
New York, NY. 10038
1-800-GOLIVER (1800-465-4837)
www.liverfoundation.org

American Lung Association
1740 Broadway
New York, NY. 10019
(212) 315-8700
www.lungusa.org

American Lyme Disease Foundation
Mill Pond Offices
293 Route 100
Somers, NY. 10589
(914) 277-6970
www.aldf.com

American Melanoma Foundation
3914 Murphy Canyon Road, Suite A132
San Diego, CA. 92123
(858) 277-4426
www.melanomafoundation.org

American Parkinson Disease Association (APDA)
1250 Hylan Blvd, Suite 4B
Staten Island, NY. 10305-1946
800-223-2732
www.apdaparkinson.org

American Society for Reproductive Medicine (ASRM)
1209 Montgomery Highway
Birmingham, AL. 35216-2809
(205) 978-5000
www.asrm.org

American Tinnitus Association
National nonprofit organization dedicated to advancing tinnitus research and educating patients
PO Box 5
Portland, OR. 97207-0005
(800) 634-8978
www.ata.org

Anxiety Disorders Association of America
8730 Georgia Avenue, Suite 600
Silver Spring, MD. 20910, USA
(240) 485-1001
www.adaa.org

Lance Armstrong Foundation
PO Box 161150
Austin, TX. 78716-1150
(512) 236-8820
www.laf.org

Arthritis Foundation
PO Box 7669
Atlanta, GA. 30357-0669
800-283-7800
www.arthritis.org

Asthma & Allergy Foundation of America (AAFA)
Dedicated to improving the quality of life for those with asthma and allergies through education, advocacy and research
1233 20th Street, NW, Suite 402
Washington, DC. 20036
(202) 466-7643
www.aafa.org

ADD Resources
Creators of the National ADHD Directory
A new national non-profit organization for people with ADD. We have 60 free articles at our website by national ADHD authorities as well as adults with ADD --and we are posting more all the time. We have a number of article for parents.

223 Tacoma Av So #100

Tacoma, WA 98402

253-759-5085

www.addresources.org

Autism Network International
An autistic-run self-help and advocacy organization for autistic people
PO Box 35448
Syracuse, NY. 13235-5448
E-mail: jisincla@mailbox.syr.edu
http://ani.autistics.org

Autism Society of America
7910 Woodmont Ave, Suite 300
Bethesda, MD. 20814-3067
1-800-3Autism
www.autism-society.org

Bone Marrow Organization
70 East 55th Street, 20th Floor
New York, NY. 10022
(212) 838-3029 or 1-800-365-1336
www.bonemarrow.org

Brachial Plexus Palsy Foundation
Non-profit organization dedicated to raising awareness of brachial plexus palsy, a birth injuring that affects children, and providing resources for affected families
210 Spring Haven Circle
Royersford, PA. 19468
E-mail: brachial@aol.com
http://membrane.com/bpp

Brain Aneurysm Foundation
The mission of the Brain Aneurysm Foundation is to provide support networks and educational resources to raise public awareness regarding early detection and treatment of brain aneurysms
295 Cambridge Street
Boston, MA 02114
(617) 723-3870

Brain Injury Association
The mission of the Brain Injury Association of America is to create a better future through brain injury prevention, research, education and advocacy
105 North Alfred Street
Alexandria, VA. 22314
800-444-6443
www.biausa.org

Breast Cancer Research Foundation
654 Madison Avenue, Suite 1209
New York, NY. 10021
(646) 497-2600
www.bcrfcure.org

Camp Firefly
A weekend camp for children Ages 5-13 with cancer or chronic blood disorders and their siblings. The camp's medical staff includes physicians, registered nurses and social workers.
Mission St. Joseph's Health System
509 Biltmore Avenue
Asheville, NC. 28801
(828) 213-1111

Cancer411
Dedicated to helping cancer patients and their families find the information that they need
www.cancer411.org

Cardiac Arrhythmias Research and Education (C.A.R.E.) Foundation
Founded by a group of electrophysiologists and individuals touched by the trauma of sudden cardiac death; providing funding for medical research and raising awareness of the unexpected death of children and young adults due to inherited heart rhythm disorders
2082 Michelson Drive, #301
Irvine, CA. 92612
800-404-9500
www.longqt.org

CDG Family Network Foundation
Non-profit organization made up of parents and physicians seeking information and support for a Carbohydrate-deficient Glycoprotein Syndrome which is also now referred to as Congenital Disorders of Glycosylation
27047 Spring Valley Rd.
Shannon, IL. 61078
(815) 864-2554
www.cdgs.com

Children and Adults with Attention-Deficit/Hyperactivity Disorder (CHADD)
National non-profit organization founded in 1987 in response to the frustration and sense of isolation experienced by parents and their children with AD/HD
8181 Professional Place, Suite 201,
Landover, MD. 20785
800- 233-4050
www.chadd.org

Children's Heart Organization
Dedicated to improving the lives of children with congenital heart defects and disease
Box 52088, Garneau Postal Outlet, Edmonton, Alberta T6G 2T5
(780) 454-7665
E-mail: ch@childrensheart.org
www.childrensheart.org

Children’s Mitochondrial Disease Network
Mayfield House, 30 Heber Walk, Chester Way, Northwich, CW9 5JB, England UK www.emdn-mitonet.co.uk

Chromosome 9P : Network for 9P Syndrome
Support for patients and families afflicted with Alfi's Syndrome
393 N. Grass Valley Rd.
Pine Valley, UT. 84781
(435) 574-1121
www.9pminus.org

Chronic fatigue and immune dysfunction syndrome (CFIDS)
PO Box 220398
Charlotte, NC. 28222-0398
Toll Free Voice Mail Line: 800-442-3437
Resource Line: 704-365-2343
www.cfids.org/default.asp

Chronic Pain Foundation
PO Box 8155
Huntington Beach, CA. 92615-8155
(714) 963-2661
www.chronicpainfoundation.com

Cleft Palate Foundation (CPF)
Includes the CLEFTLINE which is a toll free service providing information and referrals to parents of newborns with clefts and other craniofacial anomalies and to adults with such anomalies
104 S. Estes Drive Ste. 204
Chapel Hill, NC. 27514
(919) 933-9044 or 1-800-242-5338
E-mail: cleftline@aol.com
www.cleft.com

Congenital Heart Information Network
International organization that provides reliable information, support services and resources to families of children with congenital heart defects and acquired heart disease, adults with congenital heart defects, and the professionals who work with them
1561 Clark Drive
Yardley, PA. 19067
(215) 493-3068
www.tchin.org

Joseph Corpina Foundation
Dedicated to the enhancement of health and quality of life for children who have suffered traumatic brain injury
PO Box 178-H
Scarsdale, NY. 10583
Email: info@JosephFoundation.org
www.josephfoundation.org

Corporate Angel Network
Non-profit organization providing free plane transportation for cancer patients to and from recognized cancer hospitals by using empty seats aboard corporate aircraft operating on business flights
www.corpangelnetwork.org

Crohn's and Colitis Foundation of America, Inc.
CCFA's mission is to cure and prevent crohn's disease and ulcerative colitis through research, and to improve the quality of life of children and adults affected by these digestive diseases through education and support.
386 Park Ave. S., 17th Fl.
New York, NY. 10016
800-932-2423
E-mail: info@ccfa.org
www.ccfa

Cystic Fibrosis Foundation
6931 Arlington Road
Bethesda, MD. 20814
(800) FIGHT CF (344-4823)
E-mail: info@cff.org
www.cff.org

Dermatlas
An international collaborative project that enables health care professionals, parents, and patients to access high quality dermatology images on the World Wide Web. The Dermatlas is compiled, reviewed, scored and updated by physicians of the Johns Hopkins University. Currently 3102 clinical and histological images, 14 CME cases and 754 diagnoses are included in this fast growing collection of dermatology images.
Departments of Dermatology and Pediatrics
Johns Hopkins University School of Medicine
600 N. Wolfe Street, Brady 208
Baltimore, MD 21287-3200
www.dermatlas.org

Discovery Fund for Eye Research
Providing information and services that help patients and their families deal with debilitating eye disorders
The Discovery Fund for Eye Research
Cedars-Sinai Medical Center
8733 Beverly Blvd., Suite 201
Los Angeles, CA. 90048
(310) 423-6455 or 1-800-521-2524
E-mail: contactus@discoveryfund.org
www.discoveryfund.org

Dyslexic Organization
www.dyslexic.org

Eating Disorder Education Organization
Information and Education for anorexia, bulimia and binge eating
6R-20 Edmonton General Continuing Care Centre
11111 Jasper Avenue
Edmonton, AB T5K 0L4
(780) 944-2864
www.edeo.org

Ehlers-Danlos National Foundation (EDNF)
Providing emotional support and updated information to those affected by Ehlers-Danlos syndrome and to their family members. In addition, EDNF serves as a vital information link to and from the medical community
6399 Wilshire Blvd., Ste 203
Los Angeles, CA 90048
(323) 651-3038
www.ednf.org

Endometriosis Association
8585 North 76th Place
Milwaukee, WI. 53223
(414) 355-2200
www.EndometriosisAssn.org

Epilepsy Foundation of America (EFA)
4351 Garden City Dr.
Landover, MD. 20785-7223
800-332-1000
www.efa.org

Epilepsy Institute
Non-profit social service organization dedicated to improving the quality of life of people with epilepsy and their families
257 Park Ave. South, Suite 302
New York, NY. 10010
(212) 677-8550
www.epilepsyinstitute.org

Family Caregiver Alliance
An information Resource for long term care
690 Market Street, Suite 600
San Francisco, CA. 94104
(415) 434-3388
www.caregiver.org

Family Voices National Office
A network of families from throughout the United States who have children with special health needs; as well as caregivers, professionals, and friends whose lives have been touched by these children and their families.
3411 Candelaria NE, Suite M
Albuquerque, NM. 87107
1-888-835-5669
E-mail: kidshealth@familyvoices.org
www.familyvoices.org

Fatigue, Insomnia, and Chronic Fatigue Syndrome Relief
A personal web site of "Tips for Coping With Fibromyalgia & Insomnia" www.fms-help.com/contents.htm

Fightsma.com, the website for Andrew's Buddies
National organization committed to accelerating a cure for spinal muscular atrophy (SMA)
Andrew's Buddies Corp.
P.O. Box 785
Richmond, VA. 23218-0785
www.fightsma.org

Food Allergy & Anaphylaxis Network (FAAN)
FAAN works to build public awareness of food allergy through media, education, publishing, advocacy, and research efforts
10400 Eaton Place, Suite 107
Fairfax, VA. 22030-2208
800-929-4040
E-mail: faan@foodallergy.org
www.foodallergy.org

Freedom From Fear Organization
Non-profit organization advocating for those suffering from anxiety and depressive disorders
308 Seaview Ave.
Staten Island, NY. 10305
(718) 351-1717
www.freedomfromfear.org

Friends' Health Connection (FHC)
Nonprofit support network that connects people with similar health problems for the purpose of mutual support
PO Box 114
New Brunswick, NJ 08903
1-800/48-FRIEND (483-7436)
www.48friend.com

Haemochromatosis Society
Providing support to people diagnosed with Genetic Haemochromatosis
Haemochromatosis Society, Hollybush House, Hadley Green Rd., Barnete, Herts, EN5 5PR, England
www.ghsoc.org

Healing Hopes
Non-profit organization providing supportive interactive forums and information for survivors of MPD/DID. Information on Dealing With Crisis, Anxiety & Panic
www.healinghopes.org

Healing the Children
Healing the Children envisions a world where every child has access to medical care. The challenges have never been greater: the ever-changing healthcare system in the United States, the shortage of available funds to nonprofit organizations, and the ever-increasing needs of children here and around the world.
PO Box 9065
Spokane, WA 99209-9065
(509) 327-4281
www.healingchildren.org

Hearing Loss Web
Devoted to hard of hearing, late deafened, and oral deaf persons. Focuses on events, issues, support, and technology
www.hearinglossweb.com

Hemi Kids Organization
Support for kids who have hemiplegia due to pediatric stroke or other causes
Children's Hemiplegia and Stroke Association
Suite 305, PMB 149
4101 W. Green Oaks
Arlington, TX. 76016
E-mail: info@chasa.org
www.hemikids.org

Hemophilia Organization
National Hemophilia Foundation
116 West 32nd Street, 11th Floor
New York, NY. 10001
(800) 42-HANDI - (212) 328-3700
E-mail: info@hemophilia.org
www.hemophilia.org

Hepatitis Foundation International
Cultivating a community that helps people with hepatitis concerns manage and fulfill their lives
30 Sunrise Terrace
Cedar Grove, NJ. 07009-1423
800-891-0707
www.hepfi.org

Histiocytosis Association of America
An international partnership of patients, families, physicians and friends
302 North Broadway
Pitman, NJ. 08071
(800) 548-2758
www.histio.org

Jim Catfish Hunter A.L.S. Foundation
Through advocacy, education, fund raising, and philanthropy, the foundation works to bring an end to amyotrophic lateral sclerosis (ALS) and to provide support to those who are stricken with the disease
PO Box 47
Hertford, NC. 27944
www.catfishhunterals.org

Huntington's Disease Society of America
Nationwide medical referrals for those inflected with Huntington's Disease www.hdsa.org

Hypoglycemia Support Foundation
PO Box 451778
Sunrise, FL. 33345
www.hypoglycemia.org

Institute for the Study and Treatment of Endometriosis (ISTE)
Non-profit organization fostering research, education, and clinical advances in Endometriosis www.endometriosisinstitute.com
2425 West 22^ndSt.
Oak Brook, IL. 60523
(630) 954-0054

Intestinal Disease Foundation
Non profit organization providing support and information to consumers who are afflicted with chronic digestive illnesses
Landmarks Bldg., Ste. 525, One Station Square
Pittsburgh, PA. 15219-1138
877-587-9606
www.intestinalfoundation.org

Irritable Bowel Syndrome Association
Non-profit organization dedicated to helping everyone who suffers from IBS through patient support groups, treatment, accurate information and education
1440 Whalley Avenue, #145
New Haven, CT. 06515
(416) 932-3311
www.ibsassociation.org

Juvenile Diabetes Foundation International
120 Wall St, 19th Fl.
New York, NY. 10005
www.jdrf.org

Klippel-Trenaunay Support Group
Providing support for K-T Syndrome patients and their families
(952) 925-2596
E-mail: contactkt@hotmail.com
www.k-t.org

Knapp Burn Foundation
Provides emotional, social and economic support to burn victims and their families
PO Box 1476
Arlington Heights, IL. 60006
(847) 394-0329
www.knapp-burn.org

Susan G. Komen Breast Cancer Foundation
PO Box 650309
Dallas, TX. 75265-0309
800-462-9273
www.komen.org

Mary Alice Lamy Hope Charitable Organization
Foundation assisting patients and families with cancer
www.malhope4u.com

Leukemia and Lymphoma Society
Mission is to cure leukemia, lymphoma, Hodgkin's disease and myeloma, and to improve the quality of life of patients and their families
1311 Mamaroneck Ave.
White Plains, NY. 10605
(914) 949-5213
www.leukemia.org

Leukemia Research Organization
Resource for Consumers with Leukemia
820 Davis Street, Suite 420
Evanston, IL. 60201
(847) 424-0600
www.leukemia-research.org

Little Hearts on the Mend
Non-profit fund created for the purpose of providing financial support to children in need of heart surgeries who would otherwise go untreated
26710 Fond Du Lac Road
Rancho Palos Verdes, CA. 90275
E-mail: lilhearts@earthlink.net
www.littleheartsonthemend.org

Locks of Love
Non-profit organization providing wigs for children with long term medical hair loss
2925 10th Ave., North, Ste. 102
Lake Worth, FL. 33461
888-896-1588
www.locksoflove.org

Lupus Foundation of America
To educate and support those affected by Lupus
1300 Piccard Drive, Suite 200
Rockville, MD. 20850-4303
(301)670-9292
www.lupus.org

Lyme Disease Foundation
One Financial Plaza 18th Floor
Hartford, CT. 06103
(860) 525-2000
Email: lymefnd@aol.com
www.lyme.org

Lyme Disease Network
Non-profit foundation promoting education, prevention and treatment of Lyme Disease
www.lymenet.org

Macular Degeneration Foundation
P.O. Box 531313
Henderson, NV. 89053
www.eyesight.org

Make A Wish Foundation of America
Foundation granting the wishes of children with life-threatening illnesses to enrich the human experience with hope, strength, and joy
3550 North Central Avenue, Suite 300
Phoenix, AZ. 85012-2127
(800) 722-WISH (9474)
www.wish.org

March of Dimes Birth Defects Foundation
1275 Mamaroneck Avenue
White Plains, NY. 10605
888-MODIMES (663-4637)
www.modimes.org

Medical Education Institute, Inc.
"Helping people with chronic diseases learn to manage and improve their health."
414 D'Onofrio Drive, Suite 200
Madison, WI 53719
Phone: (608)833-8033
Fax: (608)833-8366
www.MedicalEducationInstitute.org

Melanoma Education Foundation
Non-profit organization providing education on Melanoma
PO Box 2023
Peabody, MA. 01960
(978) 535-3080
E-Mail: MEF@skincheck.org
www.skincheck.com

Mission of Hope Cancer Fund
Providing financial assistance to cancer patients and their families in Michigan; as well as providing educational information and emotional and grief support
Commonwealth Commerce Center
209 E. Washington Avenue, Suite 370
Jackson, MI. 49201
888-544-MHCF (6423)
www.cancerfund.org

Myelin Project
Organization working to accelerate research on repairing the myelin of the central nervous system
2136 Gallows Rd., Suite E
Dunn Loring, VA. 22027
800-869-3546
E-mail: mp@myelin.org
www.myelin.org

Myeloma Organization
12650 Riverside Drive, Suite 206
North Hollywood, CA 91607-3421
800-452-2873
www.myeloma.org

Narcotics Anonymous
World Service Office in Los Angeles
PO Box 9999
Van Nuys, CA. 91409
(818) 773-9999
www.na.org

National Adrenal Diseases Foundation
Non-profit organization dedicated to providing support, information and education to individuals having Addison's disease as well as other diseases of the adrenal glands
505 Northern Boulevard
Great Neck, NY. 11021
(516) 487-4992
e-mail: nadfmail@aol.com
www.medhelp.org/nadf

National Alliance of Breast Cancer Organizations (NABCO)
Non-profit organization with educational resources on breast cancer
9 E. 37th St., 10th Floor
New York, NY. 10016
www.nabco.org

National Alliance for the Mentally Ill (NAMI)
Non-profit, grassroots, self-help, support and advocacy organization of consumers, families, and friends of people with severe mental illnesses, such as schizophrenia, major depression, bipolar disorder, obsessive-compulsive disorder, and anxiety disorders
Colonial Place Three
2107 Wilson Blvd., Suite 300
Arlington, VA. 22201
(703) 524-7600
HelpLine: 1-800-950-6264
www.nami.org

National Association for Incontinence
NAFC's purpose is to be the leading source for public education and advocacy about the causes, prevention, diagnosis, treatments, and management alternatives for incontinence
PO Box 8310
Spartanburg, SC. 29305-8310
1-(800) BLADDER
www.nafc.org

National Attention Deficit Disorder Association
Support for consumers with A.D.D. and A.D.H.D.
www.add.org

National Grave's Disease Foundation
Non-profit education organization for Grave's Disease
PO Box 1969
Brevard, NC. 28712
(828) 877-5251
www.ngdf.org

National Headache Foundation
Volunteer non-profit organization established by physicians to assist headache sufferers and healthcare professionals
888-NHF-5552
E-mail: info@headaches.org
www.headaches.org

National Institute on Aging
Building 31, Room 5C27
31 Center Drive, MSC 2292
Bethesda, MD. 20892
(301) 496-1752
www.nia.nih.gov

National Kidney Foundation, Inc.
30 East 33rd St
New York, NY. 10016
www.kidney.org

National Multiple Sclerosis Society
733 Third Avenue, 6th Floor
New York, NY. 10017
www.nmss.org

National Necrotizing Fasciitis Foundation (NNFF)
Non-profit organization for education, resources and support in regard to necrotizing fasciitis (the flesh eating bacteria)
(616) 261-2538 or (860) 739-3474
www.nnff.org

National Neurofibromatoses Foundation
95 Pine St., 16th Fl.
New York, NY. 10005
800-323-7938
www.nf.org

National Organization for Albinism, Hypopigmentation
Nonprofit, tax-exempt organization that offers information and support to people with albinism, their families and the professionals who work with them
PO Box 959
E. Hamstead, NH. 03826-0959
800-473-2310
www.albinism.org

National Organization for Rare Disorders (NORD)
Volunteer Health Organization providing information on prevention, treatment and cure of rare "orphan diseases"
PO Box 8923
New Fairfield, CT. 06812-8923
(203) 746-6518
E-mail: orphan@rarediseases.org
www.rarediseases.org

National Osteoporosis Foundation
1232 22nd Street N.W.
Washington, D.C. 20037-1292
(202) 223-2226
www.nof.org

National Pemphigus Foundation
Non-profit organization promoting education, referrals and support to those suffering from Pemphigus and their care givers
Atrium Plaza, Suite 203
828 San Pablo Avenue
Albany, CA. 94706
(510) 527-4970
www.pemphigus.org

National Psoriasis Foundation
6600 SW 92nd Ave., Suite 300
Portland, OR. 97223-7195
(503) 244-7404
www.psoriasis.org

National Rosacea Society
800 S. NW. Highway, Suite 200
Barrington, IL. 60010
1-888-NO-BLUSH
E-mail: rosaceas@aol.com
www.rosacea.org

National Tay-Sachs & Allied Diseases Association (NTSAD)
Dedicated to the treatment and prevention of Tay-Sachs, Canavan, and related diseases, and to provide information and support services to individuals and families affected by these diseases
2001 Beacon St., Suite 204
Brighton, MA. 02135
800-906-8723
www.ntsad.org

Neuropathy Association
Non profit organization established by people with neuropathy, their families and friends, to provide support and education, and to fund research to find a cure
800-247-6968
E-mail: info@neuropathy.org
www.neuropathy.org

Opitz G/BBB Family Network
A parent-run support network for all individuals and families of children who have Opitz-G/BBB syndrome
PO Box 515
Grand Lake, CO. 80447
www.opiznet.org

Paralyzed Veterans of America
Advocacy and Support Foundation helping veterans with injury and disease
801 Eighteenth Street, NW
Washington, DC. 20006-3517
800-424-8200
www.pva.org

Parent to Parent of Georgia
Non-profit organization providing support and information to parents of children with disabilities; serving families who live in the state of Georgia . Embracing the philosophy that one of the most meaningful sources of support are other parents who have experienced parenting a child with a disability
3805 Presidential Parkway, Ste 207
Atlanta, GA. 30340
www.parenttoparentofga.org

Paul O'Neil Foundation
The mission of the Paul O'Neil Foundation is to offset out of pocket expenses incurred by families and caregivers of children with long-term care and life threatening illness. It serves families in Sagadahoc, Northern Cumberland, Lincoln, and Eastern Androscoggin counties in Maine. Assistance is provided with travel, food and comfort items expenses.
FMI: Julia O'Neil at (207) 443-1776.

Pediatric Cancer Research Foundation
Non-profit organization founded in 1982 to improve the care, quality of life and survival rate of children with malignant diseases
18 Technology Drive, Suite 147
Irvine, CA. 92618
(949) 727-7483
E-mail: admin@pcrf-kids.com
www.pcrf-kids.com

Prader-Willi Syndrome Association
5700 Midnight Pass Rd.
Sarasota, FL. 34242
(800) 926-4797
www.pwsausa.org

Proteus Syndrome Foundation
6235 Whetstone Dr.
Colorado Springs, CO. 80918
(719) 264-8445
www.proteus-syndrome.org

Scleroderma Organization
12 Kent Way, Suite 101,
Byfield, MA. 01922
Phone 978-463-5843
Info Line 800-722-HOPE (4673)
www.scleroderma.org

SHADE Foundation
The Curt and Shonda Schilling Melanoma Foundation
Is working to create sun-safety attitudes in society, especially in our youth. Developing responsible sun attitudes at an early age can eliminate the alarming statistics that continue to increase. Skin Cancer is the most common form of cancer in the US with more than 1 million new cases diagnosed each year. Approximately 92,000 will be melanoma, the most deadly form of skin cancer. Our site is a place where melanoma patients, survivors and their families can find information and support. Parents and teachers can find programs to educate their children. Corporations and individuals can learn how they can provide sun-safety to children. (602) 595 4858 www.shadefoundation.org

Sidran Institute
A leader in traumatic stress education and advocacy; a nationally-focused nonprofit organization devoted to helping people who have experienced traumatic life events
200 E. Joppa Road, Suite 207
Towson, MD. 21286
(410) 825-8888
www.sidran.com

Sleep Net
Educational, non-commercial site devoted to improving sleep health worldwide
www.sleepnet.com/support.htm

Society for Mitral Valve Prolapse Syndrome
Non-profit, charitable organization dedicated to spreading the word about MVP Syndrome
www.mitralvalveproblems.com

Spina Bifida Association of America
Promoting the prevention of spina bifida and enhancing the lives of those affected by the Spina Bifida
4590 MacArthur Blvd., NW, Suite 250
Washington, DC 20007-4226
800-621-3141
www.sbaa.org

Starlight Children's Foundation
An international non-profit organization dedicated to improving the quality of life for seriously ill children and their families. Working with more than 1000 hospitals, the Foundation provides an impressive menu of both in-hospital and outpatient programs and services. A leader in delivering distractive entertainment, Starlight's programs benefit over 100,000 children each month.
5900 Wilshire Blvd., #2530
Los Angeles, CA. 90036
800-274- STAR
www.starlight.org

Stroke Association
National Center
7272 Greenville Avenue
Dallas TX. 75231
888-478-7653
www.strokeassociation.org

Stuttering Foundation of America
Prevention and improved treatment for patients who stutter
3100 Walnut Grove Rd., Suite 603
PO Box 11749
Memphis, TN. 38111-0749
www.stuttersfa.org

First Candle/SIDS Alliance
First Candle/SIDS Alliance is a national nonprofit health organization dedicated to the promotion of infant health and survival during the prenatal period through age two with programs of advocacy, education and research, while at the same time providing compassionate grief support to those affected by an infant death. With help from more than 50 local and national partner organizations, we are working to increase public participation and support in the fight against infant mortality.
1314 Bedford Avenue, Suite 210
Baltimore, MD. 21208
800-221-7437
www.firstcandle.org

John Templeton Foundation
A repository for selected scholarly research findings and articles from the popular press on the link between prayer and health. It has been developed as a resource for everyone visiting the site – scientists, the news media, students, the general public – and presented in a way that is simple and accessible. Our intent is that you visit this site regularly to review new findings and articles. Our hope is that it will aid in research, spark discussion, and stimulate thought about prayer and wellness
E-mail: SpiritualityandHealth@templeton.org
www.templeton.org/spirituality

Thyroid.About.Com
A starting place for general and introductory information on thyroid disease, including hypothyroidism, hyperthyroidism, nodules, goiter, thyroid cancer, and autoimmune thyroid conditions such as Hashimoto's Disease and Graves' Disease

Tomorrows Children's Fund
Privately funded organization that strives to ease the pain and suffering of children with serious blood disorders www.atcfkid.com

Tourette Syndrome Association
42-40 Bell Boulevard
Bayside, NY. 11361-2820
(718) 224-2999
E-mail: ts@tsa-usa.org
www.tsa-usa.org

United Cerebral Palsy
1660 L Street, NW, Suite 700
Washington, DC. 20036
www.ucpa.org

Cody Unser First Step Foundation
Non profit corporation aimed at raising research funds to fight paralysis and to build awareness of Transverse Myelitis
PO Box 56696
Albuquerque, NM. 87187
(505) 890-0086
www.codysfirststep.org

Vascular Birthmarks Foundation
Charitable organization providing support and information resources to consumers affected by hemangiomas, port wine stains, and other vascular birthmarks and tumors
PO Box 106
Latham, NY. 12110
(877) VBF-LOOK
www.birthmark.org

Vascular Disease Foundation
3333 So. Wadsworth Blvd, #B104-37
Lakewood, CO. 80227
1-866-PADINFO (723-4636)
www.vdf.org

Voice for Joanie
Volunteer Organization in Connecticut providing computers and technology to assist patients living with ALS
(203) 770-6203
www.voiceforjoanie.org

Kristen Watt Foundation for Eating Disorder Awareness
Working to prevent eating disorders through programs to educate families, doctors and children on signs, symbols and treatments
6333 Pacific Ave.
PMB 541
Stockton, CA. 95207
(209) 472-1616
Email: kwattfoundation@aol.com
www.kristenwattfoundation.org

Wide Smiles
Non-profit organization providing resources, support and information for patients affected by cleft lip, palate birth defects
PO. Box 5153
Stockton, CA. 95205-0153
(209) 942-2812
www.widesmiles.org

Williams Syndrome Foundation
University of California
Irvine, CA. 92679-2310
(949) 824-7259
E-mail: HLenhoff@uci.edu
www.wsf.org

Wilson's Disease Association (WDA)
Funds research and facilitates and promotes the identification, education, treatment, and support of patients and other individuals affected by Wilson's Disease
4 Navaho Drive
Brookfield, CT. 06804
800-399-0266 or (203) 775-9666
E-mail: hasellner@worldnet.att.net
www.wilsonsdisease.org

Women's Health Information Center
Links to government clearinghouses and many private sector organizations pertaining to women's health
(800) 994-WOMAN
www.4woman.org

World Parkinson Disease Association (WPDA)
E-mail: info@apdaparkinson.org
www.wpda.org

National Rosacea Society 800 S. NW. Highway, Suite 200 Barrington, IL. 60010 1-888-NO-BLUSH E-mail: rosaceas@aol.com www.rosacea.org

National Rosacea Society
800 S. NW. Highway, Suite 200
Barrington, IL. 60010
1-888-NO-BLUSH
E-mail: rosaceas@aol.com
www.rosacea.org