A B C D-E F-G H-J K-L M N-O P-R S-T U-Z

Aarskog Syndrome .... (215) 943-7131 (No website)

Acid Maltase Deficiency.

Acoustic Neuroma

Adrenal Diseases

AIDS Hot Line...... (800) 342-2437

AIDS Network, National Pediatric

Alagille Syndrome

Albinism & Hypopigmentation (Sp)

Alopeia Areata

Alstrom Syndrome

Amputee, American Foundation

Anemia, Aplastic (Sp)

Anemia, Cooley's

Anemia, Fanconi

Angelman Syndrome (Sp)

Anophthalmia

Anorectal Malformations

Apert Syndrome

Aphasia

Arthritis, Juvenile *

Arthrogryposis Multiplex Congenita

Asperger's Syndrome *

Asthma & Allergy

....Allergy and Asthma Network,Mothers of Asthmatics

....Asthma-Jewish Lung Line

Ataxia

Ataxia Telangiectasia

Attention Deficit Disorder *

....... Attention Deficit Disorder Association
....... C.H.A.D.D

Autism Information *

........Autism Network for Hearing and Visually Impaired Persons

....... Autism Society of America

.......UC Davis MIND Institute *

 Auto Immune Related Diseases

Bereavement Support

....... Center for Loss in Multiple Birth (Sp)
....... Compassionate Friends*

...... .Sharing Parents

.Birth Defects

Blepharophimosis, Ptosis & Epicanthus Inversis

Blind Information:

.......Blind Babies Foundation 

...... California Deaf-Blind Services (Sp)

.......National Association for Parents of the Visually Impaired (NAPVI)  (Sp)

...... Society for the Blind *

Blood and Bone Marrow Transplant

Bowel Dysfunction Disorders 

Brain Injury:
.....Brain Injury Association 

.....Head Trauma Support Project * (916) 482-5770

.....Brain Injury Resource Center

Brain Tumor Information:

...... Children's Brain Tumor Foundation 

Burns, Phoenix Society for Burn Survivors 

....... Hospice, Children's International   

Carnitine Deficiency  (800) 554-ABCD

Celiac Disease  (Sp)

Celiac Sprue Association     

Cerebral Palsy Association of Sacramento*    

Charcot Marie Tooth Syndrome

CHARGE Syndrome

Chronic Pain *  (Sp)

Chromosome Disorders:

..........There are many types of chromosome disorders.  For more information, please go to the

              Genetic Alliance  (Sp)

Chronic Fatigue Syndrome

Cleft Lip / Palate *

Cobalamin Network (800) 785-4029

Cockayne Syndrome   (Sp)

Coffin-Lowny Syndrome   (425) 427-0939

Cooley's Anemia (See also "anemia" and "thallassemia")

Cornelia de Lange Syndrome

Craniofacial Disorders:
.........AboutFace  
.........Children’s Craniofacial Association 
.........Forward Face: Charity for Children with Craniofacial Conditions 

......... Let’s Face It  (360) 676-7325

Cri Du Chat Syndrome (5p Society)  

Crohn’s Disease & Colitis

Crouzon's Syndrome

Cyclic Vomiting Syndrome

Cystic Fibrosis*

Cystinosis (Sp)

Cystinura

Dandy Walker Syndrome  (612) 423-4008

Deaf / Hearing Impairment Information:

.......Better Hearing Inst. Hearing Helpline

.......Deafness Research Foundation   

....... Helen Keller National Center    

.......John Tracy Clinic for Preschool Deaf Children 

.......NorCal Center of Deafness  * 

....... California Deaf-Blind Services   (Sp)

.......Parent Links  

Diabetes

.......Association, American * 

.......Diabetes Insipidus (Neurogenic)

.......Diabetes, Juvenile

Down Syndrome  (Sp)

Dubowitz Syndrome

Dwarfism  (Sp)

Dyslexia

.......International Dyslexia Associatin 

...... Recording for the Blind and Dyslexic

Dysautonomia

Dystonia  (Sp)

Eagle Barrett Syndrome (Prune Belly Syndrome)

Ectodermal Dysplasia

Ehlers-Danlos Syndrome

Epidermolysis Bullosa, Dystrophic

Epilepsy  (Sp)

Erb’s Palsy

Evans Syndrome  (904) 760-3031

Facio Scapulo-Humeral Syndrome

Fatty Oxidation Disorder  (Sp)

Fetal Alcohol Syndrome

Fibrodysplasis Ossificans Progressiva

Food Allergy  (Sp)

Fragile X   (Sp)

Freeman-Sheldon Syndrome

Galactosemia

Gastroesophageal Reflux

Gastrointestinal Disorders

..........About Kids GI Disorders
.......The Oley Foundation  (Sp)

Gaucher Disease

Genetic Disorders  (Sp)

Glaucoma (Sp)

Glutaric Aciduria, Type 1

Gluten Intolerance

Glycogen Storage Disease

Goldenhar Syndrome   (Sp)

Granulomatous Disease, Chronic

Group B Strep  

Growth Disorder Information:

....... Human Growth Foundation  

....... MAGIC Foundation for Children's Growth 

Guillain-Barre Syndrome

Head Trauma

........ Head Trauma Support Project*  (916) 482-5770

........ Brain Injury Resource Center

........ Brain Injury Association

Heart Information

....... American Heart Association *   (Sp)

...... CHASER: Congenital Heart Anomalies Support Education & Resource  

...... Kids with Heart

Hemiplegia of Children Alternating

Hemophilia

Hemmorhagic Telangiectasia, Hereditary

Hermansky-Pulak Syndrome

Hernia, Diaphragmatic

Histiocytosis (Sp)

HIV & AIDS (See "AIDS")

Holoprosencephaly

Hospice

Huntington’s Disease

Hydrocephalus  (Sp)

Hyperplexia

Hypoparathyroidism

Ichthyosis

Immune Deficiency

Joubert Syndrome

K - L

Kidney:

....... National Kidney Foundation  (Sp)
.......Polycystic Kidney Research Foundation

Klinefelter Syndrome  (Sp)

Klippel-Trenaunay Syndrome

Latex Allergy

Laurence-Moon-Bardet-Biedl Syndrome

Learning Disabilities:

........ LD Association, National

.........LD Associatin of California  *  

........ Schwab Learning  (Sp)

....... Parents of Gifted/LD Students  

Lesch-Nyhan Disease

Leukemia and Lymphoma (Sp)

Leukodystrophy

Limb Disorders:

....... A Touch of Love     (800) 493-5462

Lissencephaly

Liver Disease

Long QT Syndrome

Lowe Syndrome

Lung Disease:

........Lung-Jewish Lung Line    (Sp)

........Lung Association, American   (Sp)

Lupus *

Lyme Disease

Lymphatic Malformations

Lymphedema

Malignant Hyperthermia  (Sp)

Marfan Syndrome

McCune-Albright Syndrome

Mental Health
.......National Alliance for the Mentally Ill   (Sp)  

.......National Association of the Dually Diagnosed

Mental Retardation

.......National Association of the Dually Diagnosed       

....... People First of California  *

...... The ARC   

...... Sacramento Association for the Retarded

Metabolic Disorders

...... Assoc. for Neurometabolic Disorders  (419) 885-1497

...... MAGIC Foundation

Mitochrondrial Disease

Multiple Births

Multiple Sclerosis  (Sp)

Muscular Dystrophy
..........Muscular Dystrophy Association*     
.........MD Parent Project 

Myasthenia Gravis

Myelin Diseases

Myeloma  (Sp)

Myoclonus

Myotubular Myopathy

Nager & Miller Syndrome

Neurofibromatosis  (Sp)

Neurologic Movement Disorders

Neurometabolic Disorders  (419) 885-1497

Neutropenia (800) 6NEUTRO

Nevus, Congenital  (Sp)

Niemann-Pick Disease

Noonan Syndrome

Norrie Disease  (617) 726-5718

Nutrition, Oley Foundation  (Sp)

Obsessive-Compulsive Disorder

Opitz Syndrome  (970) 627-8935

Opsoclonus-Myoclonus (Sp)

Osteogensis Imperfecta

Ostomy

Oxalosis & Hyperoxaluria

P - R

Pain, Chronic

Pallister-Hall Foundation     (802) 222-9683

Pallister-Killian Mosaic Syndrome  (Sp)

Peutz-Jeghers Syndrome

Pituitary Disorders

Phenylketonuria (PKU)

Poison Control  (800) 2221222  (Sp)

Porphyra

Prader-Willi Syndrome

Prematurity

........Marach of Dimes  *

........March of Dimes   (Sp)

....... Premature Baby

Progeria  (403) 394-1612

Prune Belly Syndrome (See Eagle Barrett Syndrome)

Pseudoxanthoma Elasticum

Psoriasis

Purine Disorders

Purpura, Idiopathic Thrombocytopenia (ITP)

.........(Sp)

Rasmussen Syndrome

Respiratory Papillomatosis, Recurrent

Retinitis Pigmentosa

Retinoblastoma

Rett's Syndrome

Reye's Syndrome

Rubinstein-Taybi Syndrome

Russell-Silver Support

Scleroderma

Septo-optic Dysplasia

Sibling Support

Shwachman Diamond Syndrome

Sickle Cell Disease

Smith-Mageni's Syndrome  (Sp)

Sotos Syndrome  (Sp)

Speech Language Information:

........Apraxia Kids

.......National Institute on Deafness and other Communication Disorders

...... National Center for Stuttering 

...... Scottish Rite Language Clinic *   (916) 731-HELP

Spina Bifida  (Sp)

Spinal Cord Injury

Spinal Muscular Atrophy  (Sp)

Stickler Syndrome  (Sp)

Sturge-Weber Syndrome  (Sp)

Sudden Infant Death Syndrome (SIDS)

Tay-Sachs and Allied Diseases

Thalassemia (See "Anemia, Cooley's")

Thrombocytopenia Absent Radius Syndrome

Tourette Syndrome

Treacher Collins Syndrome

Tremor, International Foundation  (913) 341-3880

Trisomy 18, 13 & Related Disorder

Triplets  (See also, "Multiple Births")

Tuberous Sclerosis  (Sp)

Turner Syndrome

Twin to Twin Transfusion  (Sp)

Twins (See also, "Multiple Births")

Urea Cycle Disorders

Usher Syndrome  

VATER Association

.Velo-Cardio-Facial Syndrome *  Sp)

Vestibular Disorders   (Sp)

Vitiligo Syndrome

Williams Syndrome  (Sp)

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