Our Guidelines and Preamble Fundamental Ideas The Norwegian Turner Society was established in 1988- We are politically and religiously independent – Our vision is to be onboard to help create a positive and stimulating daily life, both for those born with Turner syndrome, as well as their families- Our core values are: #Equality #Closeness #Happiness #Naturalness #Participation

Norwegian Turner Society’s Primary Goals 1 Norwegian Turner Society’s Primary Goals We work towards the realization of our goals by: - Providing counselling, information and assistance to our members as well as anyone else who has a diagnosis or interest in Turner syndrome- - Initiating activities and outreach services which can provide a developmental and positive experience for our members, in particular organizational work on the local level- - Spreading knowledge about Turner syndrome as it relates to the concrete living conditions people with this diagnosis can experience- - Contributing towards the betterment of treatment and diagnostic opportunities for our group and strengthening of scientific research possibilities concerning Turner syndrome- - Lobbying governmental authorities and other community organizations in order to further promote our group’s basic rights and interests , nationally and internationally-  

Membership Principal membership: Members with a diagnosis- Family membership: Membership for multiple family members living under the same roof as a member with a diagnosis- Supporting membership: Open membership for families of those who have a diagnosis as well as others who wishe to work towards accomplishing our society’s fundamental goals-

Annual General Meeting The Norwegian Turner Society holds an annual general meeting which is our organization’s supreme body- The Annual General Meeting’s purpose is to review the organization’s work of the previous year and to consider and adopt agreed upon and relevant proposals for the following year’s activities- Members in good standing (paid up in full!) each have a single vote in the Annual General Meeting-

Contact with Members Board’s Duties   The Board is the organization’s highest body between Annual General Meetings and has the overriding responsibility for managing its day to day operations- The decisions of the Annual General Meeting are the responsibility of the Board to effectuate- The Board can choose a working committee, consisting of three of its members- The Board shall also help to organize local chapters wherever it is practical- Contact with Members  The board publishes the organization’s own magazine for members, ”Kort og Godt”, and is responsible for its finances- The magazine’s editorial board is chosen by the annual general meeting. A paper version of the organization’s magazine is mailed to all members and supporting members-

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Finances Our organization is financed primarily through a lump sum payment provided by the Norwegian national government and is based on a yearly audited accounting of our activities and finances and the submission of a thorough and updated membership register- In addition, our membership fees provide a small source of income-

Contact Persons (likepersoner) Are our organizations public face. Our contact persons make themselves available to members or others who have relevant questions, most often in the form of a conversation concerning Turner syndrome- Our organization’s contact persons are themselves: *Adults with a diagnosis- *Parents or guardians who have a girl with a diagnosis- * Youths- It is absolutely essential that a contact person has a clear relationship to her own diagnosis and has completed appropriate professional coursework as a contact person and has signed a confidentiality statement. Just as important for our organization is having contact persons who reside themselves throughout the length and breadth of our geographically immensely stretched out land!

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Local Chapters Organizational work directed towards the establishment of geographically and demographically viable local chapters is one of our primary goals- Norwegian Turner Society members are affiliated with local chapters in their respective regions. Local chapters are responsible for their own procedures, guidelines and statutes, as long as these are aligned with those of the central organization as embedded in our constituting preamble and core values. Local chapter guidelines are approved by the central organization.

FRAMBU The Norwegian Turner Society is associated with a national competency centre for rare diagnoses (Frambu)- Frambu has over time acquired a high level of knowledge and expertise concerning our diagnosis and is a research centre in its own right- Frambu arranges popular yearly courses for adult women with a diagnosis as well as for family’s and/or siblings of girls who have a diagnosis-

Our cooperation with other organizations The Norwegian Turner Society is a member of the umbrella organization Norwegian Federation of Organizations of Disabled People (FFO). The primary goal of the FFO is to work towards the achievement of better living conditions and fulfilment of human rights for people with disabilities and chronic diseases.

International Organizational Work Our organization has contact with other Nordic Turner organizations, on a purely informal basis- We have also been happy to be represented in all of the international arrangements TSGA has organized so far!