About · Governing text

The DysNet 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.