Links

Organizations Informational Links Personal sites

 

Organizations

 

Achondroplasia Information Source
CEO: Paula Whitehead
191 HCR 3315
Hubbard, TX 76648
Telephone: (254) 533-2644
E-mail: [email protected]

 

Resource for families affected by achondroplasia, with a special emphasis on people living in Central Texas.

 

 

 

Akron Children's Hospital Regional Skeletal Dysplasia Center
Co-coordinator: Annie Yahner, RD, LD
Akron Children's Hospital
300 Locust St., Suite #160
Akron, OH 44302
Telephone: (330) 543-6633
E-mail: [email protected]

The Regional Skeletal Dysplasia Center at Akron Children's Hospital is one of only a few in existence that treats both children and adults.

 

Asociacin Civil Zoe
Telephone contacts:
Fernanda and Roberto, (011) 4642-5651
Andrea, (011) 4566-1158
Graciela and Daniel, (011) 4739-7587
E-mail: [email protected]

Personas de Baja Talla de Argentina -- Little People of Argentina.

 

Asociacin Nacional Para Problemos de Crecimeinto(CRECER)
Chairman: Nuria de Oro Bertran
Contact: Franciso Jos Vela de Oro
c/ Cuartel de Artillera, 12 - bajo
E-30002 Murcia (Espaa)
Telephone: +34 968 34 62 18
Fax: +34 968 34 62 02
E-mail: [email protected]

 

Spanish Association for Little People, a/k/a the European Growth Federation. Very thorough and professional Web site. Includes a section on the history of dwarfs and art that is so good it will make you wish you knew Spanish, if you don't already.

 

Asociacin ADAC(Asociacin para las Deficiencias que afectan al Crecimiento y al Desarrollo)
Manuel Villalobos 41
Sevilla CP 41009 (Espaa)
Telephone and fax: (954) 35 87 86
President: Teresa Barco
E-mail: [email protected]

 

Another excellent Spanish-language site, full of information.

 

Association Belge des Personnes de Petite Taille
Contact: Henry de Lannoy, President
Clos des Merisiers, 608 Bte 2
1480 Tubize, Belgium
Telephone: +32 2 355 79 64

 

Belgian Association of Little People.

Association for Children with Russell-Silver Syndrome, Inc.
c/o Jodi Zwain
22 Hoyt Street
Madison, NJ 07940
(201) 377-4531 or (313) 242-2219

For families with children who have Russell-Silver intrauterine growth retardation.

 

Association of Little People of Alberta
Calgary contact: Sandy Loewen, (403) 225-1682
Edmonton contact: Dea Allen, (780) 924-3254
E-mail: [email protected]

 

Association of Little People of Czech Republic(Palecek)
Contact: Irenea Virtov
Kroftova 1/329
150 00 Praha 5
Czech Republic
Telephone: 257 325 770
E-mail: [email protected]

 

Association for People of Short Stature in Sweden
Magnus Edman, International Correspondent
Dyns 120
870 33 Docksta
Sweden
Telephone: +46 -613 410 85
E-mail: [email protected]

 

Includes an English-language section.

 

Association qubcoise des personnes de petite taille
2177, rue Masson, suite 205
Montral, Qubec, Canada
H2H 1B1
Tlphone: (514) 521-9671
Fax: (514) 521-3369
E-mail: [email protected]

 

L'Association qubcoise 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 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.

 

Belangenvereniging Van Kleine Mensen(BVKM)
Contact and ordering information: Mrs. A. Hoeve
Secretary: Mr. M.J.H. de Groot
Noord Buitensingel 41
5911 EL Venlo
The Netherlands
Telephone: + 31 76 549 33 307
E-mail: [email protected]

 

Dutch Organization of Little People.

 

Billy Barty Foundation
10222 Crosby Road
Harrison, OH 45030
Telephone: 513-738-4428
E-mail: [email protected]

 

Named for the late founder of Little People of America, the Billy Barty Foundation has a new address, and is now the sponsor of the Billy Barty Golf Classic.

 

 

 

BKMF Austria
Griesstrae 2, A-4502
St. Marien
E-mail: [email protected]

 

BKMA stands for "Bundesverband kleinwchsige Menschen und ihre Familien," which is German for the Union of People of Short Stature and their Families. The organization's motto is "More important than a big body is a big (firm) character!"

 

Bundesverband Kleinwchsige Menschen und ihre Familien e.V. BKMF
Contact: Karl-Heinz Klingebiel
Hillmannplatz 6
D-28195 Bremen
Germany
Telephone: +49(0)421-502122
Fax: +49(0)421-505752
E-mail: [email protected]

"The Bundesverband Kleinwchsige Menschen und ihre Familien e.V. BKMF (German association of short-statured people and their families) has been representing the interests of people with restricted growth in Germany since 1988. This gives us the following tasks: to inform, to enlighten, to cooperate with medical professionals, psychologists, institutions and authorities."

 

BundesselbsthilfeVerband Kleinwchsiger Menschen e.V.
Contact: Georg Fitzi, chair
Flamingoweg 66
70378 Stuttgart
Germany
E-mail: Johannes Bosch, Webmaster, [email protected]

 

Little People of Germany. Founded in 1968, the organization is for people who are no more than 150 centimeters tall.

 

Camp Little People
Contact: Joyce Davis, camp director
150 Mill St.
Benton, PA 17814
E-mail: [email protected]

Annual summer program for LP youths.

Camp Little People II
Contact: Gale Smith
Telephone: (303) 773-9112
E-mail: [email protected]

 

Sponsored by District 10, Chapter 26, this new program brought together about 25 overnight campers of all ages near Denver, Colorado, in its 1998 debut.

 

Center for Skeletal Dysplasias
Hospital for Special Surgery
535 East 70th Street
New York, NY 10021
Contact: Erin M. Carter
Genetic Counselor and Clinical Coordinator
Telephone: (212) 774-7332
E-mail: [email protected]

 

The Center for Skeletal Dysplasias at Hospital for Special Surgery brings together an interdisciplinary team of health-care professionals committed to improving the quality of life for people with skeletal dysplasias through clinical care, research, education, and patient advocacy.

 

Alfred I. duPont Hospital for Children's Genetic Program
PO Box 269
1600 Rockland Road
Wilmington, DE 19899-0269
Contacts: Charles I. Scott, MD; Linda Nicholson, MS, MC
Telephone: (302) 651-5916
Fax: (302) 651-5948
E-mail: [email protected]

 

Dwarf Artists Coalition
Anne Danberg, President
E-mail: [email protected]
Irene Yuan, Director
E-mail: [email protected]

 

The Dwarf Artists Coalition is sponsored by Little People of America, and is specifically dedicated for LPA members in the visual and compositional arts. Each year, the DAC tries to sponsor an exhibit at the LPA national conference showcasing work from professionals, hobbyists, and children.

 

Dwarf Athletic Association of America
c/o Janet Brown, executive officer
418 Willow Way
Lewisville, TX 75077
Telephone: (972) 317-8299
Fax: (972) 966-0184
E-mail: [email protected]

 

Promotes and provides quality amateur-level athletic opportunities for dwarf athletes.

 

Dwarf Athletic Association UK
18 Rann Close,
Ladywood
Birmingham
B6 8HF
England
Telephone: +44 (0)121 454 5582
Contact: Arthur Dean, past president
E-mail: [email protected]

 

Ellis-van Creveld Syndrome Support Group
Contact: Patti Olesik
17 Bridlewood Trail
Honeoye Falls, NY 14472
Home telephone: (585) 624-8277
E-mail: [email protected]

 

Fundacin Pequeas Grandes Personas
Little People of Chile (very loosely translated!). Site seems to be lacking in contact information, but there is a guestbook.

 

Gente Pequea de Mexico A.C.
Telephone: (443) 314-5236
E-mail: [email protected]

 

Little People of Mexico.

 

Greenberg Center for Skeletal Dysplasias
Johns Hopkins Hospital
Center for Medical Genetics
Blalock 1012
Baltimore, MD 21205
Contact: Dee Miller , (410) 614-0977

 

The Kathryn and Alan C. Greenberg Center for Skeletal Dysplasias is dedicated to the medical care and education of persons with skeletal dysplasias, and to the clinical and laboratory investigation into these conditions. Toward this end, the Center brings together a multidisiplinary team of doctors and investigators dedicated to improving the quality of life for persons of short stature, and furthering basic scientific knowledge about the many causes of dwarfism.

 

Human Growth Foundation
997 Glen Cove Ave.
Glen Head, NY 11545
(800) 451-6434
E-mail: [email protected]

 

Supports basic clinical research pertaining to growth disorders. Disseminates information. Encourages development of local parent support groups. Oversees a grant program to support research.

 

International Skeletal Dysplasia Registry
Cedars-Sinai Medical Center
444 South San Vicente Boulevard, Suite 1001
Los Angeles, CA 90048
Contact: MaryAnn Priore
Telephone: (310) 423-9915
Fax: (310)423-9946
E-mail: [email protected]

 

Irish Association for Restricted Growth
P.O. Box 6239
Dublin 11
Ireland
Telephone: +353 872600179
Fax: +353 902 78083
E-mail: [email protected]

 

Little People of Bulgaria
Contact: Svetoslav Cherney, President

75 Lipnik Bul

7005 Ruse

Bulgaria
Mobile telephone: +359 898 504 168
E-mail: [email protected] and [email protected]

 

Little People of Denmark
Contact: Michael Hansen, former Vice President
Thulevej 10 st. th.
9210 Aalborg Oest.
Denmark
Telephone: + 45 98 14 14 54
Mobil phone: + 45 40 84 33 74

 

Little People of Denmark has about 120-130 members, some of whom participated in the Little People of America National Conference 2000 in Minneapolis, Minnesota.

 

Little People of Korea
Little People of Korea, founded in 2000, has approximately 150 members. There's an English introduction on its website and a photo of several members with former LPA president Leroy Bankowski.

 

Little People of Kosovo
Contact: Hiljmnijeta Apuk, President
Telephone: ++381 28 24 670
Mobile phone: ++ 381 63 8 196 255
E-mail: [email protected] and [email protected]

 

Hiljmnijeta Apuk and several other members of her organization were honored guests at the Little People of America 2002 National Conference, in Salt Lake City.

 

Little People of Manitoba
4 Lakepoint Rd.
Winnepeg, MB R3T 4R4
(204) 226-0110
Contact: Connie Magalhaes
E-mail: [email protected]

Little People of New Zealand
Contact: Katy Sinclair, Liaison Officer
108 Mayfair Ave., Hastings
New Zealand
Telephone/fax: 06 878 7506
E-mail: [email protected]

 

Little People of Norway (NiK)
Pb. 4568 Torshov
0404 Oslo
Norway
Telephone: +414 13 662
E-mail: [email protected]

 

Little People of Ontario
Box 43072
4841 Yonge Street
Toronto, ON
M2N 6N1
Canada
email: [email protected]

 

Little People of Poland
Contact: Luke Dryjanski
Bulgarska 10
60-321 Poznan
Poland
E-mail:[email protected]

Little People of Russia
 Telephone: 7 (812) 427-00-67 (Yelena and Dmitry's home phone)
Or 8-921-5577777 (Yelena's mobile phone)
E-mail: [email protected]

Little People of Russia. The link will take you to the organization's English-language website. You can access the site in Russian by clicking here.

 

Little People of Slovenia (Drustvo Malih Ljudi Slovenije)
Contact: Bernarda Korent, president
Zelezarska 5
3220 Store
Slovenia
Telephone: 00 386 3 770160 or 00 386 41 217892
E-mail: [email protected]

 

Little People of South Africa
Contact: Lize Maree
Office on the Status of Persons with Disabilities
Office of the Premier
Northern Cape Province
Kimberley
South Africa
E-mail: [email protected]

 

Little People of South Africa does not have its own website at this time. However, the Office on the Status of Persons with Disabilities is online here.

 

Little People's Research Fund, Inc.
80 Sister Pierre Drive
Towson, MD 21204
Telephone: (410) 494-0055
Toll-free: (800) 232-5773
Fax: (410) 494-0062

 

Assists little people in getting best medical care. Supports research in causes and treatment of dwarfism. Educates physicians and local medical screening clinics.

 

LPBC Society for Short Stature Awareness
Contact: Sarah Davies, president
Box 4280
Vancouver, BC
V6B 3Z7
Canada
Telephone: (604) 986-5898
E-mail: [email protected]

 

The LPBC Society for Short Stature Awareness (LPBC) is a nonprofit organization for persons of short stature and their families in British Columbia, Canada. Members meet on a bimonthly basis throughout the province to socialize and share information about medical concerns, adaptive aids, and schooling issues. In August 2003, LPBC will be hosting a national conference for delegates from across BC, Canada, and the United States.

 

Little People Welfare Organization of Malaysia
Contact: Azahari Abdullah, deputy president
E-mail: [email protected]

 

The Little People Welfare Organization of Malaysia is based in Kuala Lumpur.

 

Lyhytkasvuiset-Kortvxta ry
Ms. Kirsi Eitakari, International Representative/Correspondent
Rypysuontie 74 A 26
FI-70280 Kuopio
Finland
Telephone: +358 (0)40 5827 289
E-mail: [email protected]

 

Association of Short-Statured People of Finland.

 

MAGIC Foundation
6645 West North Ave.
Oak Park, IL 60302
Telephone: (708) 383-0808
Fax: (708) 383-0899
E-mail: [email protected]

 

The MAGIC (Major Aspects of Growth in Children) Foundation for Children's Growth and Related Adult Disorders emphasizes short-stature conditions that lend themselves to treatment, such as human-growth hormone. Founded in 1989, it has expanded from 20 original members to more than 6,000 who are now on the MAGIC network.

 

National Mucopolysaccharidoses (MPS) Society
PO Box 736 •
Bangor, ME 04402-0736
Telephone: (207) 947-1445
Fax: (207) 990-3074

 

Works with Morquio, Hurler, and related syndromes. Dedicated to serving parents through networking, physician referrals and professional publication education.

 

Northern California Regional Skeletal Dysplasia Clinic
Contact: Ericka Peasley Okenfuss, MS
Skeletal Dysplasia Clinic Coordinator
Department of Genetics
Kaiser Permanente
280 West MacArthur Blvd.
Oakland, CA 94611-5693
Telephone: (916) 614-5177
Fax: (916) 614-4768
E-mail: [email protected]
(or)

Summer Segal, MS
Skeletal Dysplasia Clinic Coordinator
Department of Medical Genetics
Children's Hospital Oakland
747 Fifty-Second St.
Oakland, CA 94609-1809
Telephone: (510) 428-3885 x2351
E-mail: [email protected]

 

The Northern California Regional Skeletal Dysplasia Clinic is a collaboration between Kaiser Permanente and Children's Hospital, Oakland.

 

Osteogenesis Imperfecta Foundation
804 West Diamond Ave., Suite 210
Gaithersburg, MD 20878
Telephone: (301) 947-0083
Toll-free: (800) 981-2663
Fax: (301) 947-0456
E-mail: [email protected]

 

The Osteogenesis Imperfecta Foundation, Inc., also known as the OI Foundation, is the only voluntary national health organization dedicated to helping people cope with the problems associated with osteogenesis imperfecta. The OI Foundation's mission is to improve the quality of life for individuals affected by OI through research to find a cure, education, awareness, and mutual support.

 

Restricted Growth Association
Contact: Ruth Morgan, Association Manager
P.O. Box 4008
Yeovil
BA20 9AW
England
RGA Office & Helpline: 01935 841 364
E-mail: [email protected]

 

Rhizomelic Chondrodysplasia Punctata (RCP) Support Group
James and Rebecca Maretta Brown, coordinators
137 25th Ave.
Monroe, WI 53566
(608) 325-2717

 

RCP is a very rare, very severe type of dwarfism. Children are seriously delayed, both developmentally and physically.

 

Short Statured People of Australia(SSPA)
Contact: Oliver Lynch, Overseas Liaison Officer
4/6 Cindy Court
Cheltenham
Victoria 3192
Australia
Telephone: (011) 613 9585 1368
E-mail: [email protected]

 

 

 

SSPA was founded as the Little People's Association of Australia, in 1968, by George and Rosemary Whitaker, a short-statured couple from Port Macquarie, New South Wales. It was here where the first LPAA national convention was held, and all subsequent national conventions have been hosted on an annual basis in all Australian states, as well as the Australian Capital Territory.

 

Short Statured People of Iraq
Contact: Mohammed Aedan Jabar
E-mail: [email protected]

 

A new, non-governmental organization for people with dwarfism that is based in Baghdad.

 

Teddy Bear Foundation for Achondroplasia
Contact: Vanessa Loeffler
P.O. Box 148
Fanwood, NJ 07023
Telephone: (908) 889-7666
Fax: (908) 889-7717
E-mail: [email protected]

 

Financial help for the families of children who have experienced severe medical problems from unusually acute cases of achondroplasia. Started by the parents of a young achondroplastic girl.

 

Turner Syndrome Society of the United States
14450 T.C. Jester
Suite 260
Houston, TX 77014
Telephone: (800) 365-9944
Fax: (800) 249-9987
E-mail: [email protected]

 

Comprising women and girls with Turner syndrome and their families. Fosters research. Provides information to parents, public and medical educators who seek to improve quality of life.

 

Turner's Syndrome Society of Canada
21 Blackthorn Avenue
Toronto, Ontario
Canada M6N 3H4
Tel: (800) 465-6744 or (416) 781-2086
Fax: (416) 781-7245

 

"The goal of the Society is to improve the quality of life for individuals and families affected by Turner's Syndrome. This is accomplished through the provision of public and professional awareness about the needs and concerns of individuals with Turner's syndrome and their families."

 

Vermont Regional Genetics Center
Leah W. Burke, MD, Clinical Director
1 Mill St., Box B-10
Burlington, VT 05401
Telephone: (802) 658-4310

 

 Informational links

 

Dwarfism.org
 Intended as a worldwide source of information on dwarfism and on organizations involved with dwarfism. A project of Nick Koonce and Brian Kline.

 

Danny Black's Dwarfism Pages
Vast quantities of dwarfism-related information.

 

Diastrophic Dysplasia
 Help and resources for one of the most common forms of dwarfism. Page created by Vita Gagne. Includes the newsletter Diastrophic Dynamics, edited by Vita and Mary Carten.

 

Morquio's Parent Support Group
 For families affected by Morquio's syndrome.

 

MPS Forum Dot Com
The forum is an informational site for families caring for a special-needs child, specifically those with MPS (mucopolysaccharidoses) and ML (mucolipidoses) disorders.

 

SED/SMD/Kniest Support Group
"This web site is designed to provide information about these medical conditions in clear and understandable English. Its purpose is to give people with these rare skeletal dysplasias support, information, and tools to do their own research."

 

Youth Support Group for SED/Kniest
"This support group is for children and teens with SED (SED-C, SED-T, SEMD, SED-K) or Kniest. You must be between the ages of 8 and 19 years old to join this group. This group will allow young people to get to know each other informally who share the same form of dwarfism. An adult with SED will be the moderator of the group (this person is also the moderator for the adult SED/Kniest group)."

 

Cartilage Hair Hypoplasia Information Center
 "Welcome to the CHH information site. This site contains links to CHH related information, pictures, links to the listserv and CHH personal websites."

 

Metratropic Dysplasia Dwarf Registry
"Families Helping Families."

 

Multiple Epiphyseal Dysplasia Support Group
This condition is also known as Fairbank's disease.

 

Primordial Dwarfism
 An online guide to this rare form of dwarfism.

 

Progeria Research Foundation
 This premature-aging condition is also a form of dwarfism.

 

Jeune's Syndrome Information/Support Network
"Jeune's Syndrome is an autosomal recessive genetic disorder of the thoracic bone structure. Major features include a small thoracic cage, shortened bones of the arms and legs, and renal dysfunction."

 

LPs Health Site
A Web resource devoted to keeping LPs healthy. Includes male and female weight charts, diets, exercise regimes, and information about alternative therapies.

 

Disability Central
 "Disability Central's goal, its mission, is to provide a whole world of quality information and resources to be available at the fingertips of anyone who needs it. 

 

Occupations and Avocations
An informal list of different occupations LPA members have held, past and present, put together by Fred Short.

 

Short Persons Support
 A wealth of information -- news articles, a library, even a list of famous short people throughout history. Not particularly geared toward dwarfs or dwarfism (the editor, Steven Goldsmith, says he's five-foot-two), but useful nevertheless.

 

International Clearinghouse for Birth Defects Monitoring Systems
Dedicated to the sharing of data, news, and views on congenital malformations, monitoring, research, and prevention.

 

Online Mendelian Inheritance in Man (OMIM)
A service of the National Center for Biotechnology Information, OMIM can be searched by keyword. It contains a wealth of information on dwarfism and other genetic conditions.

 

Genetic Alliance
The Genetic Alliance, formerly the Alliance of Genetic Support Groups, Inc., is a nonprofit tax-exempt organization founded in 1986 as a national coalition of consumers, professionals and genetic support groups to voice the common concerns of children, adults and families living with, and at risk for, genetic conditions.

 

Directory of Parent Centers
A state-by-state resource from the Federation for Children with Special Needs. Where to go in order to get your child the help she or he needs.

 

Healthlink USA
"Free links to 1000's of health sites, 100's of health topics, featuring treatment, diagnosis, prevention, risk factors, support groups, e-mail lists, personal stories, etc. Updated regularly."

 

Films Involving Dwarfs and Dwarf Actors
 An unusual resource from the British Web site "Films Involving Disabilities," which is "directed towards teachers, students and anyone who has an interest in how disability is represented in films."

 

Los Angeles Breakers
Founded in 1986 through the Dwarf Athletic Association of America, the Breakers comprise athletes between two-foot-eight and four-foot-eleven, male and female.

 

Mini-Hoops Basketball
 "Featuring the Canadian Half-Pints Miniature Basketball Team." The emphasis is on education and self-esteem; offers a "Don't Tease" program for kids.

 

The Tiny Trotters
Another fundraising LP basketball team.

 

On a Roll Radio
Talk radio on life and disability, hosted by Greg Smith. "On a Roll Radio" is broadcast on Sundays at 9:05 p.m. EST. If your computer is outfitted with RealPlayer, you can listen to it on the Web.

 

4 foot 10: Little People, Big Lives
A 27-minute film about three dwarfs attending their first LPA convention. Once you arrive at the Aquarius Productions website, search for the exact phrase "4 foot ten."

 

Short
A 10-minute film written and directed by Imogen Murphy, an Irish filmmaker. Available for viewing online.

 

Children of Difference Foundation
 Started by filmmaker Lisa Abelow Hedley, whose documentary Dwarfs: Not a Fairy Tale, was featured on HBO. You can purchase a copy of the film on this website.

 

Short Interviews
 Kristoffer Elinder has made a video called Short Interviews, comprising conversations with LPs, dance-floor action, and other events at the Boston 2003 LPA National Conference. You can purchase a copy in either VHS or DVD format.

 

ABILITY Magazine
 For and about people with disabilities, including information about the Americans with Disabilities Act, scholarships, employment, housing, and much more. For information about the magazine or about Ability Awareness, a nonprofit organization dedicated to enhancing the quality of life for people with dwarfism through education, employment, housing, and volunteer opportunities, contact [email protected].

 

Little People Global
"The only agency to specialise in dwarf talent, Little People Global can help you find the right talent for your film, TV commercial, advertisement or promotional event." Based in Christchurch, New Zealand.

 

 Personal Web sites