PALLISTER-HALL SYNDROME

 

Pallister-Hall Foundation

http://www.kumc.edu/gec/support/palshall.html

 

 

PERVASIVE DEVELOPMENTAL DISORDER / PDD

See:  Autism

 

 

PELIZAEUS-MERZBACHER DISEASE

See also:  Leukodystrophy

 

The PMD Foundation

http://www.pmdfoundation.org

 

 

PHENYLKETONURIA (PKU)

See also:  Metabolic Disorders

 

Childrens PKU Network

*    pkunetwork@aol.com

 

National Coalition for PKU & Allied Disorders

http://www.pku-allieddisorders.org

 

National PKU News

http://www.pkunews.org

 

 

PITUITARY DISORDERS / TUMORS

 

Pituitary Network Association

http://www.pituitary.org

 

 

POLIO

Informed Parents Against VAPP (Vaccine Associated Paralytic Polio)

http://www.ipav.org

 

International Polio Network

http://www.post-polio.org

 

 

POMPE DISEASE

See also:  Glycogen Storage Diseases; Muscular Dystrophy

 

The Childrens Pompe Foundation

http://www.pompe.org

 

 

PORPHYRIA

 

Metabolic Disorders American Porphyria Foundation

http://www.enterprise.net/apf

 

 

PORT WINE STAINS

See:  Sturge-Weber Syndrome

 

 

PRADER-WILLI SYNDROME

 

Prader-Willi Foundation

http://prader_willi.inter.net

 

 

PROGERIA

 

International Progeria Registry

*    wtbibr@aol.com

 

The Progeria Research Foundation, Inc.

http://www.progeriaresearch.org

 

 

PRUNE BELLY SYNDROME

 

Prune Belly Syndrome Network

http://www.pedsuro.com

 

 

PSORIASIS

 

National Psoriasis Foundation

http://www.psoriasis.org

 

 

PURINE METABOLIC DISORDERS

 

Purine Research Society

http://www2.dgsys.com/~purine/

 

 

PURPURA, IDIOPATHIC THROMBOCYTOPENIA (ITP)

 

ITP Society

http://www.ultranet.com/~itpsoc

 

 

RASMUSSEN SYNDROME

See also:  Epilepsy; Seizure Disorder

 

Resmussen Syndrome and Hemispherectomy Support Network

*   rssnlynn@aol.com

 

 

REFLEX SYMPATHETIC DYSTROPHY SYNDROME

 

Reflex Sympathetic Dystrophy Syndrome Association of America

http://www.rsds.org

 

 

RENAL DISORDERS

See:  Kidney Disorders

 

RESPIRATORY PAPILLOMATOSIS, RECURRENT

Recurrent Respiratory Papillomatosis Foundation

http://www.rrpf.org

 

 

RETINITIS PIGMENTOSA

See also:  Macular Diseases; Usher Syndrome; Visual Impairments

 

Retinitis Pigmentosa International

http://www.rpinternational.org

 

The Foundation Fighting Blindness

http://www.blindness.org

 

 

RETT SYNDROME

 

International Rett Syndrome Association

http://members.home.net/rettsyndromeontario

 

Rett Syndrome Research Foundation

http://www.rsrf.org

 

 

ROBINOW SYNDROME

See also:  Craniofacial Disorders; Short Stature

 

Robinow Syndrome Foundation

http://www.Robinow.org

 

 

RUBINSTEIN-TAYBI SYNDROME

See also:  Craniofacial Disorders; Heart Disorders

 

Rubinstein-Taybi Parent Group

http://www.rubinstein-taybi.org

 

 

RUSSELL-SILVER SYNDROME

See also:  Growth Disorders; Short Stature

 

The Magic Foundation Russell-Silver Support Group

http://www.magicfoundation.org