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You are here: Home / New investigators / Newsletter / Lyhytkasvuiset – Kortväxta ry (in English: People with Short Stature“). By Sanna Leppäjoki-Tiistola, Ellen Nirhamo, and Hanna Taipaleenmäki

Lyhytkasvuiset – Kortväxta ry (in English: People with Short Stature“). By Sanna Leppäjoki-Tiistola, Ellen Nirhamo, and Hanna Taipaleenmäki

Lyhytkasvuiset – Kortväxta ry is a national non-profit organization for people with restricted growth and their relatives in Finland. The association was founded in 1984 and has about 600 members. The goal of the association is to help the people with restricted growth to connect with each other, to promote their rights and to contribute to the research of different types of skeletal dysplasias.

The association fights for the rights of the people with restricted growth, as due to ignorance they still face prejudice, inequality, inaccessibility and other challenges not only in personal lives, studies and career but also in social and health care, which is shown also by LYHTY-study*. The weapon is a pen, or laptop these days. In the past two years the board of the association has made statements for example on the correct terminology, which should be used about people with restricted growth. Another statement followed by several objections on following the Finnish legislation and Convention on the Rights of Persons with Disabilities (CRPD) regarding health care and treatment of patients with restricted growth. The advocacy work continues, and there the support of specialist doctors and researchers of the field is crucial…

The association carries out active voluntary work with the help of one employee: most of the activities are run by volunteers and organized throughout the year. The biggest events are the annual spring and fall meetings which gather approximately 80 participants. Regional correspondents organize local events. There are also summer camps for youngsters and families, meetings targeted for different age groups and voluntary education opportunities amongst other smaller events. The good atmosphere, peer support and tips for everyday life with restricted growth are seen very important by the members and other participants.

The association also has a magazine that comes out four times a year and is active in social media with Facebook, Twitter & Instagram accounts @lyhytkasvuiset #lyhytkasvuiset

Related articles:

Towards an ICF-based self-report questionnaire for people with skeletal dysplasia to study health, functioning, disability and accessibility  (Anttila, Tallqvist, Muñoz, Leppäjoki-Tiistola, Mäkitie ja Hiekkala 2021)

Functioning and equality according to International Classification of Functioning, Disability and Health (ICF) in people with skeletal dysplasia compared to matched control subjects – a cross-sectional survey study. Hyvönen, Anttila, Tallqvist, Muñoz, Leppäjoki-Tiistola, Teittinen, Mäkitie ja Hiekkala 2020

At ECTS 2022 in Helsinki, a Charity Event was organized to support this patients’ organization.

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