DysNet is run by EDRIC (European Dysmelia Reference Information Centre), an organisation set up by a group of thalidomiders from across Europe. EDRIC brings together a range of organisations that support people living with dysmelia conditions. EDRIC recognises that many individuals with dysmelia, along with their families and support groups across the world, have made discoveries about great resources, adaptations and medical treatments to help themselves, their children or their patients in managing their condition. Their accessible database DysNet provides an array of information, access to forums and to rare condition information. Organisations can also request to join this international network (€100).
What if? Your baby has a limb difference
Having a child with a limb difference can come as a shock. The ‘What-if’ information portal provides the resources that parents need when they first find out about their child’s limb difference. This portal hosts articles, videos, information and resources of benefit to children, parents, families and healthcare professionals across the globe. The What-if website is run by EDRIC
The Aussie Hands Foundation provides support, understanding and encouragement to parents, children, teenagers and adults with a hand difference. Aussie Hands also provides a forum for discussion for people with a hand difference, raises the awareness of hand differences in the community and offers a library of hand difference resource material.
The Amputee Association of NSW is run by amputees for amputees and provides information, support and an annual camp for young people with limb differences (AMP CAMP).
The Amputee Coalition of Canada‘s mission is to provide educational tools and programs designed to support the needs of persons affected by limb loss as well as improve their quality of life through learning, self-management and active participation within the community.
The War Amps was founded by amputee war veterans returning home to Canada from the First World War. Today, the Association continues to serve war amputees, and all Canadian amputees, including children.
The Bundesverband für Menschen eV with arm or leg amputation – BMAB is the Federal Amputee’s Association of Germany. BMAB is a national, non-profit organisation representing people who have experienced amputation or are born with limb differences.
Amputees Federation of New Zealand offers support and promotes the welfare of all amputees. This includes offering peer support and encouragement when the going gets tough, and providing information and advice to help amputees achieve the quality lifestyle to which they aspire.
Amputee Ireland’s goal is to help amputees develop and maintain a positive and meaningful life. Amputee Ireland provides impartial information and news to help amputees achieve independence, participation, social and occupational integration in the life of the community.
Exceed have established Schools of Prosthetics and Orthotics in five countries in Southeast Asia. At each School, Exceed have established a teaching clinic, helping to establish national standards of care in the minds of students and resource holders. Exceed works with local teachers, community leaders and families and provide free high quality rehabilitation services for people with disabilities (including children with limb differences).
Limbcare are a charity offering hope, advice and peer support to amputee/limb impaired individuals, communities, families and others impacted around them.
The Limbless Association provides information and support to the limb-loss community. The Limbless Association offer support to individuals of any age, whether they are about to have an amputation or are already living with congenital or acquired limb-loss as well as offering assistance and information to carers, family members and friends.
Reach supports parents, children and young people who are affected by upper limb deficiency. Reach aims to raise awareness of upper limb difference, help children reach their potential, support families in need and promote the interests and needs of children affected by limb difference.
STEPS supports children and adults affected by lower limb conditions such as limb deficiencies, clubfoot or hip conditions.
United Amputees provide an accessible information and signposting hub which may enable the amputee population of the UK to live a life of greater independence. United Amputees offer a portal within which all amputees and persons with limb difference may share life experiences, giving the opportunity for greater independence and self-reliance. This organisation unites the collective voice of all amputees across the UK to campaign upon the issues which impact living, working, social participation, prosthetic service provision, employment/education access and equality.
This website provides the patients and parents of those diagnosed with Fibular Hemimelia with information, resources and support as well as raising awareness and fundraising for Fibular Hemimelia related Charities.
United States of America
The Amputee Coalition’s mission is to reach out to and empower people affected by limb loss to achieve their full potential through education, support and advocacy, and to promote limb loss prevention.
Go out on a Limb’s mission is to help children with limb loss and their families create a network of support, including mentorship, social skill development, education, peer support, and adult amputees role models.
I-CAN is dedicated to promoting education, support, information, and empowerment to traumatic and congenital limb different children and their families.
Limbs Without Limits is a charity committed to support, motivate and empower individuals living with a mobility impairment to live a healthier more active lifestyle.
The mission of the Lucky Fin Project is to celebrate, educate, support and unite families and individuals with limb differences. Lucky Fin offers a support network for parents across the USA and around the world, links parents to medical information and provides education on limb differences.