About · Governing text

The statutes, readable online.

Adopted by the two Extraordinary Meetings of 20 October 2011, replacing the founding regulations of 13 October 2008. This page is an abridged, plain-language rendering for orientation; the signed PDF remains the authoritative text and is available from the secretary.

01 · Statutes

Identity and objective (§1–2)

§1 · Name, registration and official language

The organisation is named DYSNET, a not-for-profit NGO registered in Stockholm, Sweden. The official language is English.

§2 · Objective

DYSNET safeguards the interests of persons with congenital limb-reduction deficiencies (dysmelia): an information service for patient groups; a network for sharing information across the EU and beyond; advocacy and support for research; a network of specialist practitioners and centres of best practice; promotion of assistive technologies; systems for managing clinical information; advice to national authorities; and research on social and economic inclusion.

02 · Statutes

Membership (§3–7)

§3 · Membership

Open to patient groups and organisations representing people affected by dysmelia. Entities led by people affected by dysmelia that accept the objectives and statutes shall be accepted; others at the Board's discretion.

§4 · Members' rights

All members may take part in DysNet's activities and must be kept informed of the organisation's work.

§5 · Members' duties

Pay the membership fee, work for DysNet's development, abide by the statutes, promote DysNet, and stay loyal to its objectives.

§6 · Expulsion

The Board may expel a member for false statements at admission, conduct bringing DysNet into disrepute, serious breaches, or unpaid fees; the member may appeal to a general meeting within 30 days.

§7 · Withdrawal

Members may withdraw on written request; fees are not refunded.

03 · Statutes

Governance (§8–15)

§8–10 · General meetings

The AGM is held before 30 April each year; notice 30–60 days ahead; motions at least 21 days ahead. The AGM approves accounts, elects the chair, deputy chair, Board, auditors and nominating committee, and sets fees.

§11 · Extraordinary meetings

Convened by the Board when necessary or at the request of one third of members; shorter notice allowed when the situation requires.

§12 · Voting

Members in good standing vote; decisions by simple majority unless stated otherwise; a member may carry up to five written proxies.

§13 · The Board

Four to nine members, elected for two years; the majority of the Board shall be people with dysmelia. The Board appoints operating officers and may co-opt up to three members.

§14–15 · Remuneration and signature

The AGM decides remuneration; DysNet is bound by the Board, by two Board members jointly, or by two appointed signatories jointly.

04 · Statutes

Finances and audit (§16–18)

§16 · Accounts

Kept per accepted bookkeeping principles; closed each financial year and handed to the auditor by 15 February.

§17 · Audit

At least one auditor with at least one deputy.

§18 · Confidentiality

Personal data is handled as prescribed by law and DysNet's confidentiality rules.

05 · Statutes

Amendments and validity (§19–21)

§19 · Amendment and dissolution

Amending the statutes requires two general meetings (annual or extraordinary) and a two-thirds majority of votes cast. Dissolution requires a written request of two thirds of voting members, confirmed by qualified majority.

§20–21 · Validity

These statutes apply since their adoption by the two Extraordinary Meetings of 20 October 2011.