The Mission of the IWSA is to promote international knowledge and awareness of WAGR/11p Deletion syndrome and its complications and treatments, to stimulate research and to reach out those affected by WAGR syndrome in an effort to improve their lives.
- provides information about WAGR/11p deletion syndrome
- supports and encourages individuals and families affected by this disorder
- promotes research and public awareness
- maintains a website providing information and resources related to WAGR/11p deletion syndrome
- maintains/oversees a “private” parent/caregiver discussion/support group on Facebook, which hosts more than 150 members
- maintains a public Facebook page
- maintains Twitter and Pintrest accounts
- maintains/moderates a yahoo listserv discussion group for parent and caregivers
- produces an electronic newsletter, WAGR Warrior, on a regular basis to share current information and resources, fundraising, research, family stories and photos, and activities related to the IWSA and WAGR syndrome
- hosts our annual WAGR Weekend family get-together for families of individuals with WAGR syndrome. WAGR Weekend takes place each summer in a different city in the United States and provides an opportunity for families to meet in person in a casual and friendly atmosphere, to share a few days of camaraderie and friendship, to learn about and share new information, and to be amongst other families who understand the joys and challenges of caring for an individual with WAGR syndrome. Other “mini-WAGR Weekends” take place during the course of the year and have been held in the past in the United Kingdom and Japan as well as the US
- provides information packets for parents, including medical articles, guidelines for physicians, brochures and resource lists. This information is also available on the website at www.wagr.org
- provides access to IWSA Health Consultant, Kelly Trout (Kelly.firstname.lastname@example.org) and IWSA Education Consultant, Rhonda Sena (Rhonda.email@example.com) to address specific questions and/or concerns related WAGR syndrome
- offers participation in the CoRDS/IWSA Patient Registry, which allows patients and caregivers the opportunity to provide information on symptoms, diagnoses, and medical history in a secure online site. Registries can facilitate research and help develop treatments and therapies.
Due to our non-profit status as a public charity we are unable to assist in fundraising for specific individuals/families or assist with medical expenses.
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