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65 66</head><body> 67<a class="skip-link" href="#main">Skip to content</a> 68<header class="site"> 69 <div class="container site-bar"> 70 <a class="logo" href="/" aria-label="DysNet home"><img src="/assets/img/dysnet-logo.png" alt="DysNet â The Online Dysmelia Community" width="269" height="176"></a> 71 <button type="button" class="nav-toggle" id="nav-toggle" aria-expanded="false" aria-controls="main-nav">Menu</button> 72 <nav class="main" id="main-nav" aria-label="Main"> 73 <span class="nav-links"><a href="/about/" aria-current="true">About</a><a href="/knowledge/">Knowledge</a><a href="/registry/">Registry</a><a href="/voice/">Voice</a><a href="/contact/">Contact</a><a class="nav-join" href="/about/members/">Join us</a></span> 74 <button id="search-btn" type="button" class="search-trigger" aria-label="Search the site"> 75 <svg viewBox="0 0 24 24" fill="none" stroke="currentColor" stroke-width="2" stroke-linecap="round" width="14" height="14" aria-hidden="true"><circle cx="11" cy="11" r="8"/><line x1="21" y1="21" x2="16.65" y2="16.65"/></svg> 76 <span class="search-label">Search</span> <kbd>âK</kbd> 77 </button> 78 <span class="nav-ctas"> 79 <a class="btn btn-donate" href="/donate/">Donate</a> 80 <a class="btn btn-primary" href="/about/members/">Join us</a> 81 </span> 82 </nav> 83 </div> 84</header> 85<div id="search-overlay" class="search-overlay" hidden> 86 <div class="search-modal" role="dialog" aria-modal="true" aria-label="Search"> 87 <div class="search-row"> 88 <input type="search" placeholder="A condition, an ORPHAcode, a registry, a centreâ¦" aria-label="Search the site: conditions, ORPHAcodes and ICD codes, registries, care centres, associations, research teams and substances"> 89 <button type="button" class="search-close">ESC</button> 90 </div> 91 <ul class="search-results"></ul> 92 </div> 93</div> 94<main id="main" tabindex="-1"><nav class="crumbs container" aria-label="Breadcrumb"><a href="/">Home</a> ⺠<span aria-current="page">About</span></nav> 95<section> 96 <div class="container"> 97 <div class="tick"></div> 98 <p class="eyebrow">About · Built by families</p> 99 <h1 class="display">About DysNet: a network families built.</h1> 100 <p>In 2009, the Swedish Thalidomide Society (FfdN), the EX-Center knowledge and rehabilitation centre and the UK Thalidomide Trust registered EDRIC, the European Dysmelia Reference Information Centre, in Sweden. The portal opened in 2012 and the network became DysNet: the only global network dedicated to congenital limb differences.</p> 101 102 <div> 103 <div class="tick"></div> 104 <p class="eyebrow">01 · Vision</p> 105 <h2 class="h2" id="s-what-we-work-towards">What we work towards.</h2> 106 </div> 107 <p>A world where every family affected by a congenital limb difference can find the knowledge that concerns them, and where the communityâs own data drives the research that shapes their care. DysNet pools what member associations know at national level into a shared international resource: documented research, a registry owned by patients themselves, and one voice in the institutions where decisions are made.</p> 108 109 <div> 110 <div class="tick"></div> 111 <p class="eyebrow">02 · Three missions</p> 112 <h2 class="h2" id="s-everything-dysnet-does-fits-one-of-three-missions">Everything DysNet does fits one of three missions.</h2> 113 </div> 114 <div class="grid cols-3"> 115 <div class="card acc-library"><h3 class="h4"><a href="/knowledge/">Knowledge</a></h3><p>The international reference point for limb-difference research: five maintained registers, published as data.</p></div> 116 <div class="card acc-studies"><h3 class="h4"><a href="/registry/">Registry</a></h3><p>The international associative registry of limb malformations, our flagship.</p></div> 117 <div class="card"><h3 class="h4"><a href="/voice/">Voice</a></h3><p>Families represented where European decisions are made, with mandates and reports.</p></div> 118 </div> 119 120 <div> 121 <div class="tick"></div> 122 <p class="eyebrow">03 · History</p> 123 <h2 class="h2" id="s-from-malmo-2012-to-today">From Malmö 2012 to today.</h2> 124 </div> 125 <div class="grid cols-2"> 126 <figure class="photo"> 127 <picture><source srcset="/assets/img/dysnet-banner-2012.webp" type="image/webp"><img src="/assets/img/dysnet-banner-2012.jpg" alt="The original DysNet launch banner: Let the conversation begin" width="750" height="1000" loading="lazy" decoding="async"></picture>
128 <figcaption>The launch banner, 2012: âLet the conversation begin.â Photo: DysNet.</figcaption> 129 </figure> 130 <div> 131 <p><strong>2008-2009</strong> · EDRIC founded and registered in Sweden (org. no. 802444-3015).</p> 132 <p><strong>2012</strong> · The web portal opens; first network meeting in Malmö.</p> 133 <p><strong>2015</strong> · Stockholm meeting; the network grows across Europe.</p> 134 <p><strong>2025</strong> · Co-organiser of a biorobotics conference with Regione Lombardia.</p> 135 <p><strong>2026</strong> · The refocused strategy: three missions, five registers, one registry.</p> 136 <div class="yt-embed" data-yt="P8M2n7Gr3V0" data-title="The chairâs address to members"> 137 <picture><source srcset="/assets/img/chair-address-thumb.webp" type="image/webp"><img src="/assets/img/chair-address-thumb.jpg" alt="Video: Claudio Pirola, DysNetâs chair, addresses the members" width="640" height="480" loading="lazy" decoding="async"></picture> 138 <button type="button" aria-label="Play: the chairâs address to members"><span></span></button> 139 </div> 140 <p style="font-size:var(--text-small);color:var(--dys-muted)">The chairâs address to members · <a href="https://www.youtube.com/watch?v=P8M2n7Gr3V0" target="_blank" rel="noopener external">open on YouTube â</a></p> 141 </div> 142 </div> 143 144 <div id="board"></div> 145 <div> 146 <div class="tick"></div> 147 <p class="eyebrow">04 · The board</p> 148 <h2 class="h2" id="s-volunteers-who-carry-a-mission-each">Volunteers who carry a mission each.</h2> 149 </div> 150 <p>Most of the board live with dysmelia or are parents of children with limb differences, as the statutes require. Under the 2026-2029 strategy every seat owns a mission: no seat without a mission. Hover or tap a card to read the bio and write to its holder.</p> 151 <div class="grid cols-3" style="margin-top:var(--space-3)"> 152 <div class="card person person-flip" tabindex="0"> 153 <div class="faces"> 154 <div class="face front"> 155 <div class="avatar">CP</div> 156 <h3 class="h4">Claudio Pirola</h3> 157 <p class="role">Chair · Italy</p> 158 <p><span class="chip">Mission 3 · Voice</span></p> 159 </div> 160 <div class="face back"> 161 <h3 class="h4">Claudio Pirola</h3> 162 <p>Joined Raggiungere in 1999; at DysNet since its 2012 foundation. Carries representation, external voice and member relations.</p> 163 <p><a href="mailto:[email protected]">[email protected]</a></p> 164 </div> 165 </div> 166 </div><div class="card person person-flip" tabindex="0"> 167 <div class="faces"> 168 <div class="face front"> 169 <div class="avatar has-photo"><picture><source srcset="/assets/img/board-loic-rigal.webp" type="image/webp"><img src="/assets/img/board-loic-rigal.jpg" alt="" width="288" height="288" loading="lazy" decoding="async"></picture></div> 170 <h3 class="h4">Dr Loïc Rigal</h3> 171 <p class="role">Deputy Chair · France</p> 172 <p><span class="chip">Mission 2 · Registry</span></p> 173 </div> 174 <div class="face back"> 175 <h3 class="h4">Dr Loïc Rigal</h3> 176 <p>Doctor in pharmaceutical law and patient advocate. Elected board member of the French association Assedea. Deputy Chair since the general assembly of 26 August 2026, carrying the registry mission.</p> 177 <p><a href="/contact/">Write via the contact page</a></p> 178 </div> 179 </div> 180 </div><div class="card person person-flip" tabindex="0"> 181 <div class="faces"> 182 <div class="face front"> 183 <div class="avatar">MM</div> 184 <h3 class="h4">Michaela Moik</h3> 185 <p class="role">Thalidomide patient expert · Austria</p> 186 <p><span class="chip">Member relations</span></p> 187 </div> 188 <div class="face back"> 189 <h3 class="h4">Michaela Moik</h3> 190 <p>Thalidomide survivor, co-founder of the Austrian thalidomide self-help group, former youth social worker in Vienna.</p> 191 <p><a href="mailto:[email protected]">[email protected]</a></p> 192 </div> 193 </div> 194 </div><div class="card person person-flip" tabindex="0"> 195 <div class="faces"> 196 <div class="face front"> 197 <div class="avatar has-photo"><picture><source srcset="/assets/img/board-marie-wikstrom.webp" type="image/webp"><img src="/assets/img/board-marie-wikstrom.jpg" alt="" width="288" height="288" loading="lazy" decoding="async"></picture></div> 198 <h3 class="h4">Marie Wikström</h3> 199 <p class="role">Secretary · Sweden</p> 200 <p><span class="chip">Secretariat</span></p> 201 </div> 202 <div class="face back"> 203 <h3 class="h4">Marie Wikström</h3> 204 <p>
204She is the patient coordinator of EX-Center in Solna, the Swedish knowledge and rehabilitation centre for children and adults with multiple limb deficiencies, which she helped found in 1993. She has been active in the Swedish Thalidomide Society since 1986 and was its Permanent Secretary from 2004 to 2006. She is herself a thalidomide survivor.</p> 205 <p><a href="mailto:[email protected]">[email protected]</a></p> 206 </div> 207 </div> 208 </div><div class="card person person-flip" tabindex="0"> 209 <div class="faces"> 210 <div class="face front"> 211 <div class="avatar has-photo"><picture><source srcset="/assets/img/board-salvatore-giambruno.webp" type="image/webp"><img src="/assets/img/board-salvatore-giambruno.jpg" alt="" width="288" height="288" loading="lazy" decoding="async"></picture></div> 212 <h3 class="h4">Salvatore Giambruno</h3> 213 <p class="role">Treasurer</p> 214 <p><span class="chip">Accounts</span></p> 215 </div> 216 <div class="face back"> 217 <h3 class="h4">Salvatore Giambruno</h3> 218 <p>Past president of Raggiungere and of LEDHA; a career in sales management; parent of a daughter with dysmelia.</p> 219 <p><a href="mailto:[email protected]">[email protected]</a></p> 220 </div> 221 </div> 222 </div><div class="card person person-flip" tabindex="0"> 223 <div class="faces"> 224 <div class="face front"> 225 <div class="avatar">TA</div> 226 <h3 class="h4">Tobias Arndt</h3> 227 <p class="role">Chief Operating Officer · Belgium</p> 228 <p><span class="chip">Operations</span></p> 229 </div> 230 <div class="face back"> 231 <h3 class="h4">Tobias Arndt</h3> 232 <p>IT expert and researcher, author on electronic commerce; supporting thalidomide projects across Europe since 2007.</p> 233 <p><a href="mailto:[email protected]">[email protected]</a></p> 234 </div> 235 </div> 236 </div> 237 </div> 238 <figure class="photo" style="margin-top:var(--space-4)"> 239 <picture><source srcset="/assets/img/board-inail-2024.webp" type="image/webp"><img src="/assets/img/board-inail-2024.jpg" alt="DysNet board members and guests at the INAIL prosthetics centre, August 2024" width="1800" height="1012" loading="lazy" decoding="async"></picture> 240 <figcaption>The board and member-association guests at INAIL Centro Protesi, Vigorso di Budrio, August 2024. Photo: DysNet.</figcaption> 241 </figure> 242 243 <div> 244 <div class="tick"></div> 245 <p class="eyebrow">05 · Documents</p> 246 <h2 class="h2" id="s-the-texts-that-govern-us">The texts that govern us.</h2> 247 </div> 248 <ul> 249 <li><a href="/about/transparency/">Statutes, accounts and AGM documents</a></li> 250 <li><a href="#board">The board</a> and <a href="/about/members/">the member associations</a></li> 251 </ul> 252 </div> 253</section> 254</main> 255<footer class="site"> 256 <div class="container"> 257 <div class="cols"> 258 <div> 259 <h2 id="s-dysnet-the-dysmelia-network">DysNet · the dysmelia network</h2> 260 <p style="max-width:26rem;font-size:var(--text-small)">The global network connecting anyone personally or professionally affected by congenital limb differences. Registered in Sweden since 2009 (org. no. 802444-3015).</p> 261 <ul> 262 <li>DysNet Ideell Förening · Nybodagatan 1 · 171 42 Solna · Sweden</li> 263 <li>Brussels office · Rue du Chantier 2 · B-1000 Brussels · Belgium</li> 264 <li><a href="mailto:[email protected]">[email protected]</a></li> 265 </ul> 266 </div> 267 <div> 268 <h2 id="s-knowledge">Knowledge</h2> 269 <ul> 270 <li><a href="/knowledge/bibliography/">Bibliography</a></li> 271 <li><a href="/knowledge/registries/">Registries</a></li> 272 <li><a href="/knowledge/researchers/">Researchers</a></li> 273 <li><a href="/knowledge/care-centres/">Care centres</a></li> 274 <li><a href="/knowledge/teratogens/">Teratogens register</a></li> 275 <li><a href="/knowledge/ongoing-studies/">Studies</a></li> 276 <li><a href="/knowledge/resources/">Resources</a></li> 277 <li><a href="/knowledge/understanding-dysmelia/">Understanding dysmelia</a></li> 278 <li><a href="/knowledge/causes-of-dysmelia/">Causes of dysmelia</a></li> 279 <li><a href="/knowledge/epidemiology/">Epidemiology</a></li> 280 </ul> 281 </div> 282 <div> 283 <h2 id="s-network">Network</h2> 284 <ul> 285 <li><a href="/registry/">The registry</a></li> 286 <li><a href="/voice/">Where DysNet sits</a></li> 287 <li><a href="/voice/reports/">Reports</a></li> 288 <li><a href="/about/members/">Member associations</a></li> 289 <li><a href="/about/transparency/">Transparency</a></li> 290 <li><a href="/donate/">Support DysNet</a></li> 291 </ul> 292 </div> 293 <div> 294 <h2 id="s-follow">Follow</h2> 295 <ul> 296 <li><a href="https://www.facebook.com/DysNet">Facebook</a></li> 297 <li><a href="https://www.linkedin.com/company/dysnet/">LinkedIn</a></li> 298 <li><a href="https://www.youtube.com/user/DysmeliaNetwork">YouTube</a></li> 299 <li><a href="https://www.youtube.com/watch?v=P8M2n7Gr3V0">The chairâs address</a></li> 300 </ul> 301 </div> 302 </div> 303 <div class="legal"> 304 © 2026 DysNet Ideell Förening · <a href="/privacy/">Privacy</a> · <a href="/accessibility/">Accessibility</a> · <a href="/about/statutes/">Statutes</a> · <a href="/about/transparency/">Transparency</a> 305 </div> 306 </div> 307 <p class="page-date container">Page updated 30 September 2026 · Written by the DysNet documentation team, reviewed by the board.</p> 308</footer> 309<div id="consent" class="consent" role="dialog" aria-live="polite" aria-label="Measurement consent" hidden> 310 <div class="consent-inner"> 311 <p class="consent-msg"><strong>Help us see which pages are used</strong> 312 We would like to count visits with Google Analytics, so we can tell which registers families actually reach. 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