Dwarfism - Short Stature

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, constitutional delay, other conditions)

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)

E-mail: LPADataBase@juno.com

Web Site: www.lpaonline.org

Little People of America Teen Page, Books, Organization Links
Types of Dwarfism and Definitions
LPA Parents' Forum (not currently active, web only), Mayeux family, jmayeux@gte.net
LPA Parents' Committee - Rob and Betty Jacobsen, 3010 Olympia Way, Longview, WA 98632, Voice: 360.636.0276, BBS/fax: 360.578.1948, E-mail: jacobsen@aone.com
Frequently Asked Questions
Languages: English, Spanish

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/

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

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 / Deficiency, 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,Thyroid Disorders Septo Optic Dysplasia, McCune-Albright Syndrome other Rare Disorders and 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 best medical care. Supports research in causes and treatment of dwarfism. Educates physicians and local medical screening clinics

Association for Children with Russell Silver Syndrome, Inc.: Jodi Zwain, 22 Hoyt Street, Madison, NJ 07940

Adoption

LPA Adoption Committee, Grady and Mary Quick, at mhquick@juno.com

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

Achondroplasia UK, Tel: 01761 235877

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

Specific Conditons

Achondrogenesis Type 1B [ACG1B; Achondrogenesis, Fraccaro Type], GeneReviews
Achondroplasia Links, Teddybear Foundation
Bone Growth and Achondroplasia, BBC Health: Ask the Doctor
Atelosteogenesis Type 2 [AO2, McAlister Dysplasia], GeneReviews
Diastrophic Dysplasia Help
Dolichospondylic Dysplasia 3-M Syndrome [3M Dwarfism], GeneReviews
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

Jeune Syndrome, OMIM

Jeune Syndrome, eMedicine
Langer-Giedion Syndrome Association
MHE Family Support Group, 1727 Ironwood Dr., Idaho Falls, ID 83402, Phone: 208.523.6459
Mucopolysaccharidosis Syndromes
National Mucopolysaccharidoses (MPS) Society, 17 Kraemer Street, Hicksville, NY 11801, 516.931.63
Multiple Epiphyseal Dysplasia (M.E.D) support page
Multiple Epiphyseal Dysplasia [EDM4, rMED], GeneReviews
Multiple Epiphyseal Dysplasia, Dominant [Fairbank Disease, Ribbing Disease. Includes: Multiple Epiphyseal Dysplasia 1 (EDM1); Multiple Epiphyseal Dysplasia 2 (EDM2); Multiple Epiphyseal Dysplasia 3 (EDM3); Multiple Epiphyseal Dysplasia 5 (EDM5); Multiple Epiphyseal Dysplasia, COL9A1 Related], GeneReviews
Multiple Epiphyseal Dysplasia, Recessive [EDM4, rMED], GeneReviews
Multiple Hereditary Exostoses (MHE)
Osteogenesis Imperfecta Resources
Osteogenesis Imperfecta Foundation, 5005 W. Laurel Street, Suite 210, Tampa, FL 33607-3836, 813.282.1161
Rhizomelic Chondrodysplasia Punctata (RCP) Family Support Group, 137 25th Ave., Monroe, WI 53566
Rhizomelic Chondrodysplasia Punctata Type I [RCDP 1], GeneReviews
Robinow Syndrome Support Group, 15955 Uplander St. NW, Andover, MN 55304-2501
Russell Silver Syndrome
Schimke Immunoosseous Dysplasia [Spondylo-Epiphyseal Dysplasia, Autosomal Recessive; SIOD], GeneReviews
Short Rib Polydactyly Syndrome (SRPS) Family Network
Spondyloepiphyseal Dysplasia Tarda, X-Linked [SED Tarda, X-Linked; SEDL; SEDT; Spondyloepiphyseal Dysplasia, Late; X-Linked SED], GeneReviews
Turner Syndrome Resources
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, New (2002) Turner Syndrome Guide For Families English & Spanish (Espanol)

Constitutional Delay

Constitutional Delay, other Growth Delay Conditions, Magic Foundation
Constitutional Growth Delay, eMedicine Article

Other Resources

Charity Ability Dwarfism Information
Dwarfism / Short Stature Links, Birth Disorder Information Directory (BDID.com), search for specific diagnosis
Genetics Glossary from Growth, Genetics and Hormones Journal
Health Supervision for Children With Achondroplasia (RE9514), American Academy of Pediatrics, March 1995
Pregnancy and short stature, Greenberg Center for Skeletal Dysplasias
Wheeless' Textbook of Orthopaedics
Yahoo! Dwarfism search engine

Listserv / newsgroups / mailing lists

DWARFISM Mailing List, to subscribe, send message "subscribe dwarfism" to listserv@ucsd.edu
SKELDYS Mailing List, an unmoderated mailing list for Skeletal Dysplasia specialists, sponsored by the International Skeletal Dysplasia Registry at Cedars-Sinai Medical Center, Los Angeles, CA 310.855.6673 (Bill Wilcox, MD, PhD). To subscribe, send the message " subscribe skeldys [your e-mail address]" to mailserv@csmc.edu
Usenet - alt.support.dwarfism, newsgroup, frequently asked questions, wide-ranging discussion of social and medical aspects of dwarfism, Send e-mail to: dkennedy@shore.net

Also See

National organizations, genetic conditions or birth defects
Information on Genetic and Hormone Disorders, Vanderbilt University School of Medicine Nashville, TN
Endocrine Genetic Conditions
Dwarfism, GeneReviews

Books

Dwarfism / Short Stature Related Books, Birth Disorder Information Directory

Non-fiction books

Ablon, Joan, Little People in America: The Social Dimensions of Dwarfism, Praeger Pub. Div., 1984, 0030001196
Ablon, Joan, Living with Difference - Families with Dwarf Children, 1988
Highland, Ellen, The Challenges Facing Dwarf Parents: Preparing for a New Baby, 1989
Kuklin, Susan, Thinking Big: The Story of a Young Dwarf, Lothrop, Lee & Shphrd, 1986
Muir Vanetten, Angela, Dwarfs don't Live in Doll Houses, Adaptive Living, 1988, 0-945828-80-1

Fiction books

Mawer, Simon.Mendel's Dwarf, Harmony Books, 1998 - see book reviews
Helgi, Ursula. Stones from the River, Schribner, NY, 1997, ISBN# 0-684-84477-X
Irving, John, Son of the Circus, 1997
Kerr, M.E.,Little Little, HarperCollins Publishers, 1981, 0-06-447061-X

Growth Curves

Growth Charts, KidsHealth
Growth Curves (pages 11-17 of .pdf document), Growth Charts, Centers for Disease Control (CDC), National Center for Health Statistics
Growth References: Third Trimester to Adulthood, charts specific for achondroplasia, amyoplasia, DeLange syndrome, diastrophic dysplasia, Down syndrome, fragile-X syndrome, Marfan syndrome, multiple pterygium syndrome, Noonan syndrome, Prader-Willi syndrome, pseudoachondroplasia, Rubinstein-Taybi syndrome, sickle cell disease, spondyloepiphyseal dysplasia congenita, trisomy 13, trisomy 18, Turner syndrome, Williams syndrome, Greenwood Genetic Center
Growth Charts for Children with Down Syndrome
Growth Charts for Chinese Children, Far East Medical Journal, 1 101-109 (1965)

Other

Short Dwarf entertainer

To locate a genetic counselor or clinical geneticist:

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