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Dwarfism / Short Stature

(Skeletal Dysplasias, Achondroplasia, Jeune Syndrome [Asphyxiating Thoracic Dystrophy], multiple exostoses, hormonal short stature, Cartilage-hair hypoplasia, [CHH, Metaphyseal chondrodysplasia, McKusick-type], Chondroectodermal dysplasia, Ellis-van Creveld syndrome, Congenital adrenal hyperplasia, DeMorsier syndrome [Septo optic dysplasia], Diastrophic dysplasia, Ellis-van Creveld syndrome [EvC],   Growth-hormone deficiency, Hypochondrogenesis, Hypochondroplasia, Hypopituitarism, Growth-hormone deficiency, Hypopituitary dwarfism, Kniest syndrome [Kniest dysplasia, metatropic dysplasia type II],  McCune-Albright syndrome, Mesoectodermal dysplasia [Ellis-van Creveld syndrome], Metatropic dysplasia, Morquio syndrome [MPS-IV (mucopolysaccharidosis)], Multiple epiphyseal dysplasia, [MED], Optic-nerve hypoplasia, Osteogenesis Imperfecta, Panhypopituitarism, Growth-hormone deficiency, Pituitary dwarfism, Primordial dwarfism, Pseudoachondroplasia, Rhizomelic chondrodysplasia punctata [RCP], Russell-Silver syndrome [Silver-Russell syndrome, Silver syndrome, Russell syndrome], Septo optic dysplasia, Spondyloepimetaphyseal dysplasia, Strudwick [SEMD (or SMD)], Spondyloepiphyseal dysplasia congenita [SED, SEDc], Thanatophoric dwarfism, Turner syndrome, other conditions)

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Organizations | Clinics | International | Specific Syndromes | Adoption | Books / References
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Little People of America (LPA), Inc.
P.O. Box 745, Lubbock, TX 79408
Toll free help line: 888.LPA.2001 (24 hours daily)
Voice mail & FAX capabilities
E-mail: LPADataBase@juno.com
Web Site: www.lpaonline.org
dwarfism.org, centralized dwarfism resources from: Little People of America, Inc. (LPA), Asociacion Nacional Para Problemas de Crecimiento, Crecer Asociacion ADAC - Asociacion para las Deficiencias que afectan al Crecimiento y al Desarrollo, Association for Children with Russell Silver Syndrome, Inc., Association Quebecoise des Personnes de Petite Taille, Billy Barty Foundation (BBF), Children's Hospital Oakland, Cedars-Sinai Medical Center, Diastrophic Dysplasia, Alfred I. duPont Hospital for Children, Dwarf Athletic Association of America (DAAA), Ellis van Creveld or Chondroectodermal Dysplasia Support (EVCSG), Environmental Health Network, Greenberg Center for Skeletal Dysplasias, Human Genome Data Base (GDB), Human Growth Foundation, International Center for Skeletal Dysplasia, International Growth Federation, International Skeletal Dysplasia Registry, Johns Hopkins University Medical Center, Kaiser Permanente Medical Center, Kniest Group, LPA Adoption Services, LPA Parents' Forum, Little People of Bulgaria, Little People of Manitoba (LPM), Little People of New Zealand, Inc. (LPNZ), Little People of Ontario (LPO), Little People of Japan (LPJ), Little People's Research Fund, Inc., Medical Advisory Board, The Medical Information Supersite, Metatropic Dwarf Registry, National Adoption Foundation, National Mucopolysaccharidoses (MPS) Society, Northern California Skeletal Dysplasia Clinic, Online Mendelian Inheritance in Man (OMIM), Osteogenesis Imperfecta Foundation, Rainbow Kids, Restricted Growth Association (RGA), Short Statured People of Australia, Skeletal Dysplasia Clinic St. Joseph Hospital, Turner Syndrome Society of the United States, Turner Syndrome Society of Canada

Billy Barty Foundation, Inc.
929 W Olive Avenue, Suite C, Burbank, CA 91506
Phone: 818.953.5410
Fax: 818.953.7129
Web site: www.rth.org/bbf/
Educational and lobbying for individuals with dwarfism
Human Growth Foundation
7777 Leesburg Pike (P.O. Box 309), Falls Church, VA 22043
Phone: 800.451.6434 or 703.883.1773
Fax: 703.883.1776
Supports basic clinical research pertaining to growth disorders. Disseminates information. Encourages development of local parent support groups. Oversees a grant research program
3710 W Temperance, Lambertville, MI 48144
Phone: 313.854.8132
Web page: www.hgfound.org/

Jeune Syndrome (Asphyxiating Thoracic Dysplasia, ATD, Thoracic-Pelvic-Phalangeal Dystrophy, Asphyxiating Thoracic Dystrophy)

Jeune Syndrome Support Network
1400 S.Lakeview Blvd., Lorain, OH 44052
Phone: 440.246.1578
E-mail: kurage@adelphia.net
or Jeune's Family Support Group, P.O. Box 41, Temperance, Michigan 48182 USA
Web page: www.geocities.com/HotSprings/Chalet/5523/
Jeune Syndrome, OMIM
Jeune Syndrome, eMedicine
MHE Family Support Group
1727 Ironwood Dr., Idaho Falls, ID 83402
Phone: 208.523.6459
Parents of Dwarfed Children
11524 Colt Terrace, Silver Spring, MD 20902
Phone: 301.649.3275

Short Stature Foundation
17200 Jamboree Rd, Suite "J", Irvine, CA 92714-5828
Phone: 800.243.9273
Fax: 714.261.9035

The MAGIC Foundation for Children's Growth and Adult Related Disorders
1327 N. Harlem Ave., Oak Park, IL 60302
Phone: 800.362.4423 or 708.383.0808
Fax: 708.383.0899
E-mail: mary@magicfoundation.org
(Growth Hormone Deficiency, Adult Growth Hormone Deficiency, Congenital Adrenal Hyperplasia, Precocious Puberty, Russell-Silver Syndrome Turner Syndrome, Thyroid Disorders Septo Optic Dysplasia, McCune-Albright Syndrome Rare Disorders, Other Support Groups )

Dwarf Athletic Association of America
c/o Janet Brown, 418 Willow Way, Lewisville, TX 75067
214.317.8299
Promotes and provides quality amateur level athletic opportunities for dwarf athletes.

Central Star Chapter of LPA (Greater Kansas City)

Little People Research Fund, Inc.
80 Sister Pierre Drive, Towson, MD 21204
410.494.0055
Assists little people in getting medical care, research support into causes and treatment of dwarfism, education for physicians and local clinics, Dwarfism: What is it?
Association for Children with Russell Silver Syndrome, Inc.
Jodi Zwain, 22 Hoyt Street, Madison, NJ 07940
Adoption

Clinics

Skeletal Dysplasia Clinic
Kleberg Genetics Center, Texas Children's Hospital - Clinical Care Center 6701 Fannin, 16th floor, Suite 1610, Houston, Texas 77030
832.822.4298 or 800.364.5437 ext. 24298
Skeletal Dysplasia Clinic, Oakland, CA

International

International Skeletal Dysplasia Registry
Cedars-Sinai Medical Center, 444 S. San Vicente Boulevard, Suite 1001, Los Angeles, CA 90048
Phone: 310.423.9915, Fax: 310.423.9939
E-mail: mpriore@mailgate.csmc.edu
International Nomenclature of Constitutional Disorders of Bone: Osteochondrodysplasias

Restricted Growth Association
61 Lady Walk, Maple Cross, Rickmansworth, Herts WD3 2YZ, England

Association Quebecoise des Personnes de Petite Taille
(Quebec's Association of Persons of Short Stature)
1251 rue Robin, Montreal, QC H2L 1W8 CANADA
514.521.9671
L'Association Quebecoise des Personnes de Petite Taille regroups les personnes qui ont le nanisme et/ou leurs parents, de meme que toute personne interessee a soutenir la cause. L'organisme a ete fonde en 1976, sous un autre nom, par un groupe de personnes de petite taille.
The Quebec's Association of Persons of Short Stature regroups people who have dwarfism and/or their parents, as well as everyone interested to support the cause. The organization was founded in 1976, under another name, by people of short stature
.

Little People of Ontario
P. O. Box 43072, 4841 Yonge Street, Toronto ON M2N 6N1 CANADA
Web page: www.lpo.on.ca/
Email: lpo@bfree.on.ca

Skeletal Dysplasias Web Page, University Children's Hospital University of Zurich 

Little People of New Zealand
108 Mayfair Ave., Hastings, New Zealand

Short Statured People of Australia (SSPA)

Skeletal Dysplasias Web Page, University Children's Hospital, University of Zurich

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Other Resources

Magic Foundation
6645 W. North Ave., Oak Park, IL 60302
Phone: 708.383.0808 / 800-3-MAGIC-3, Fax: 708.383.0899
E-mail: mary@magicfoundation.org
Web page: www.magicfoundation.org
(Includes kids page, brochures/ publications on Growth Hormone, Congenital Adrenal Hyperplasia, Precocious Puberty, Russell-Silver Syndrome, Turner Syndrome, Thyroid Disorders, Septo Optic Dysplasia, McCune-Albright Syndrome, Underlying Conditions of Growth Abnormalities, Evaluation, Adults, Psychosocial Issues of Growth Delayed Children, Transition to Adult, Intrauterine Growth Retardation, Hypothyroidism, Hypophosphatasia, Failure To Thrive, Me My Growth Hormone (Specifically for Kids), Constitutional Growth Delay, Dental Problems Associated With Growth Hormone Deficiency, Adults Living With GHD, other Rare Disorders and Support Groups)
 
National Mucopolysaccharidoses (MPS) Society
17 Kraemer Street, Hicksville, NY 11801
516.931.6338

Osteogenesis Imperfecta Foundation
5005 W. Laurel Street, Suite 210, Tampa, FL 33607-3836
Phone: 813.282.1161

Rhizomelic Chondrodysplasia Punctata (RCP) Family Support Group
Jim & Becky Brown, 137 25th Ave., Monroe, WI 53566

Robinow Syndrome Support Group
Kevin & Karla Kruger, 15955 Uplander St. NW, Andover, MN 55304-2501

Turner Syndrome Society of the United States
14450 T.C. Jester, Suite 260, Houston, TX  77014 USA
Phone:  800.365.9944 or 832.249.9988, Fax:  832.249.9987

Other Conditions / Syndromes

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Also See

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Books

Non-fiction books

Fiction books

Publications

Other

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Genetics Education Center
University of Kansas Medical Center © 1995-2012
Debra Collins, M.S. CGC, Genetic Counselor, dcollins@kumc.edu


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