Support Groups

Group photo at a KSG event
Group photo at a KSG event

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Groups about dwarfism and short stature

KSG is not responsible for any information on any of the sources below.

  • Several volunteers who helped develop this site have generously agreed to be contacts.
  • Email or call the Little People of America’s National Headquarters Administrator at lpadatabase@juno.com or call 1-888-LPA-2001
  • The SED and Kniest e-group was formed in August, 2000. You can talk to people with Kniest, SMD, and SED and also look at archives of conversations. You can subscribe and one daily summary or individual emails.
  • Parent of Little People – this helpful group has over 700 members and is moderated by a parent of a little person.
  • Skeletal Dysplasia Clinics will sometimes help match families to similarly affected ones. Due to confidentiality reasons, but you need to ask for the clinics to match you with other parents.

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Information in Spanish

Teens with Dwarfism

  • Dwarf Teen is an “interactive forum for dwarf teens through to talk about issues that concern them and to have clean fun. For teens with dwarfism and for teen dwarf members of Little People of America (LPA).”
  • Teen Dwarf is a list for 13- to 19-year-old LPs and their friends.

Adults

Dwarf Singles/Dating

  • Little Person Singles “This group is strictly for LP singles! It is a group of LP singles who are looking for companionship with other LPs. So please do not join if you are not a Little Person.”
  • Dwarfism Alternative Dating is “geared at supporting the alternative lifestyles in dwarfism. Whether it be gay, lesbian, bisexual, or somewhere in between, you can find support here with us.”
  • http://www.lpdate.org/

Dwarfs of African Descent

  • Little People of Color“This group is for all little people of African American descent. Let’s share ideas, chats, dating tips, and friendship. All are welcome to join, including people of average stature.”

    Women with dwarfism
  • Women with Dwarfism “This is a place for any woman who has dwarfism to hang out and talk, chat or just plain out gossip:) WOMEN ONLY PLEASE!!!! NO MEN!!!!”

    Men with dwarfism
  • Short Men is “for men who are 3’0″ to 5’4″ – little, short, wee, dwarf, small men.”

    Spirituality/Religion
  • Dwarfs 4 Christ is “for people affected with dwarfism to profess about their faith, talk about Christian and family values, ask for prayer and pray for one another, and just enjoy conservative chat.”

    Dwarfism and mental health/society
  • Dwarfs in a Mind Maze “is for people of short stature who are currently or have in the past experienced illness involving Depression, Insomnia, Anxiety, etc.”
  • What It’s Like Meeting an LP “This group is for LPs of any age and for friends, family, whatever, to discuss about what it’s like being an LP, and then being around one questions for the LPs, things APs should know, etc.”
  • Short Society.“This group is for Short statured men and women who are tired of the lack of respect we face over our height. We are not ashamed of our height, in fact we celebrate it.”

    Dwarfs and Athletics and Health
  • Dwarf Athletes “Pictures of dwarf athletes, links to their sites, and discussion of LP athletes by those who participate.”
  • LPs Health is “primarily a SUPPORT group. It is a friendly group of people who are UNDER 5FT with various forms of restricted growth/short stature and who are trying to lose a few pounds or are struggling to maintain their weight with diet and exercise. Health-related issues are also discussed.”
  • Also see the KSG Exercises and alternative therapies page.
  • You can also search for more at Yahoo Groups.

    Disabilities chat rooms and listserves
  • American Self-Help group on-line Sourcebook: http://centersite.org/selfhelp/
  • Disability Grapevine is a newsletter, distributed by e-mail, on issues related to disabilities and written by people with disabilities.

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Conferences

Conferences are a great way to meet people and learn about the latest research. If you can’t go to the conference, try to get a hold of the conference papers!

Please see the Newsletters and Events page for current and past conferences.

Do Your Own Research Page

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Dwarfism Support Groups in Africa

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Dwarfism Sites Asia

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Dwarfism Sites – United States of America and Canada based Organizations

  • Little People of America’s website, www.lpaonline.org is a great place to start! You can download articles, find out about your local chapter of LPA, and get much more information.
  • Dwarfism.org: http://www.dwarfism.org/. A very comprehensive site containing links to other organizations, specialized equipment, and more.
  • http://www.shortsupport.org. This website has three goals: support and provide reference material to persons of short stature, raise awareness of the social and economic issues facing short people, and provide inspiration to short people to help better their lives and attitudes. There are also essays by people of short stature, health articles, news articles, links to clothing and more.
  • Long list of dwarfism sites from the University of Kansas: http://www.kumc.edu/gec/support/dwarfism.html
  • The National Mucopolysaccharidosis Society, http://www.mpssociety.org/, is an extensive online source of information about the family of disorders known as the Mucopolysaccharidosis Diseases.
  • The Human Growth Foundation, http://www.hgfound.org/ helps individuals with growth-related disorders, their families, and health care professionals through education, research, support, and advocacy. The HGF primarily deals with growth hormone-related disorders, though it has resources useful for people with all kinds of dwarfism.
  • Ability’s Dwarfism Page: http://www.ability.org.uk/dwarfism.html. This is part of a large British ability awareness and advocacy group. The page contains a wealth of information about dwarfism and also many disabilities. It is very well worth visiting. You will probably go back to it many times.
  • The Birth Disorder Directory Information page, http://www.bdid.com/, has a wealth of information about dwarfism including medical research, as well as many birth defects.
  • Danny Black’s Dwarfism resources: http://shortdwarf.com/main/dwarf_links.htm. This site lists dwarfism resources, acting employment opportunities, scholarships, and more.
  • The Osteogenisis Imperfecta (OI) Foundation Home Page: http://www.oif.org/. This web site contains facts sheets, medical resources, advocacy issues and more! A lot of useful information for SED and SMD’s. While OI is a different and unrelated condition, people with OI face many of the same issues as SED and SMD’s.
  • The Little People’s Research Fund: http://lprf.org/dwarfism.html. This organization raises funds for researching and assisting those with dwarfism.
  • http://www.fleshandbones.com/readingroom/pdf/576.pdf has a good write-up about how X-rays of people with skeletal dysplasias are different, and what specific differences to look for.

Support groups for Dwarfs in Canada

Dwarfism Support Groups in South America

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Europe

  • Little People of the Netherlands: http://www.bvkm.nl
  • Little People of Spain/ Asociación Nacional para Problemas de Crecimiento. CRECER c/ Cuartel de Artillería, 12 – bajo http://www.crecimiento.org/ 30002 MURCIA ESPAÑA
    Telfs.: +34 968 34 62 18 | +34 968 90 22 02 | +34 968 90 22 03
    Fax: +34 968 34 62 02 (last checked October 2004)
  • Little People of Sweeden: http://www.fkv.se/
  • Please send us resources for people with dwarfism in Europe support@ksginfo.org

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Skeletal Dysplasia Support Groups in Australia/New Zealand

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Sites Dedicated to Genetics

  • The Alliance of Genetic Support Groups http://www.geneticalliance.org/ 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.
  • http://www.geneclinics.org/ is ‘a publicly funded medical genetics information resource developed for physicians, other healthcare providers, and researchers, available at no cost to all interested persons.’ You need to register before getting information. This is a comprehensive site with a lot of valuable information.
  • The March of Dimes, http://www.modimes.org, is one of the oldest organizations dedicated to preventing birth defects. They provide research and support for families with birth defects.
  • University of Utah Genetics Page: http://medgen.genetics.utah.edu. This site has many links to genetics sites, clinical resources, and educational sites. This is an especially good site if you are doing research.
  • UK Human Genome Mapping Project Resource Centre, http://genetics.ich.ucl.ac.uk/, is a good place to get more links to medical site.
    Note: Their web site lumps together all forms of SED and SMD and makes the conditions seem much more severe than they in fact are. It is impossible to distinguish which complications are relevant to a particular type of SED or SMD. This can be unnecessarily frightening to a parent first getting the news that a child has a skeletal dysplasia.
  • http://www.rad.washington.edu/mskbook/dysplasia.html is a down-to-earth explanation of a few skeletal dysplasias. This page is refreshingly different.
  • International Birth Defects Information Systems: http://www.ibis-birthdefects.org/ is A Web site dedicated to Birth Defects, Genetics and Teratology.

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Organizations Dedicated to Researching Rare Conditions

Most of these contain information about dwarfism.

  • National Organization for Rare Disorders (NORD): http://www.rarediseases.org/. NORD is an umbrella organization for rare diseases. It has information on some forms of SED, SMD, Kniest, many other rare conditions. They also provide some grant moneys, medical assistance grants, and family support. There is a charge for getting information from their database.
  • If you want a lot of articles and links to pages about genetic conditions, go to http://www.orthopaedicweblinks.com/. This site has patient information, information for medical providers, and even articles about trampoline safety!
  • The Birth Disorder Directory Information page, http://www.bdid.com, has a wealth of information about dwarfism including medical research, as well as many birth defects.
  • http://orphanet.infobiogen.fr/ is a page is both French and English that has information on rare diseases.
  • The Murdoch Institute, http://murdoch.rch.unimelb.edu.au/, is an independent Australian research organization devoted to advancing knowledge about genetic disease and birth defects.
  • http://kidshealth.org/ is a great site for general medical information for children. It is sponsored by the Nemours foundation and related to the Alfred I duPont Skeletal Dysplasia Clinic in Wilmington, Delaware. Their site contains some interesting on-line clinical cases.
  • National Center for Biotechnology Information, http://www3.ncbi.nlm.nih.gov /Omim/, is rather technical, but you can get some good information about genetics.
  • Karolinska Institute, http: //www.mic.ki.se/Diseases/c5.html, Sweden’s only university for medicine, put together an thorough page of links about musculo-skeletal diseases (diseases affecting bones and muscles). This page is well worth visiting.
  • http://www.orthopaedicweblinks.com/ “Orthopaedic Web Links (OWL) strives to become the definitive catalog of the Orthopaedic Internet.”
  • CHORUS, the Collaborative Hypertext of Radiology, http://chorus.rad.mcw.edu/index/6.html has a well designed web page, but some of the write-ups have sparse information. It is also very clinical. There are some good references, though.
  • Growth, Genetics, and Hormones Journal’s web page has current articles, related events, and a links page: http://www.gghjournal.com/
  • WE MOVE is a comprehensive resource for movement disorder information and the hub of movement disorder activities on the web. http://www.wemove.org/