Promote awareness, stimulate research, and support families affected by WAGR syndrome
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To be the world's most respected source of help, hope, and information for those touched by WAGR syndrome
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Respect and compassion. Ethics, trust, and transparency. Stewardship and fiscal responsibility. Commitment to learning, collaboration, innovation, research, and privacy. Membership and access to information and support will always remain free
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Individuals with WAGR syndrome, families, friends, and caregivers; physicians and medical professionals; researchers; therapists; teachers; rare disease and nonprofit organizations; and aniridia patients and organizations
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The International WAGR Syndrome Association is a not-for-profit 501 (c)(3) charitable organization comprised of an international network of families, health care professionals and researchers, and others who care for individuals with WAGR syndrome. The organization originated with a small number of families looking for information and support. These desires and the motivation of this small group were the beginning of the IWSA.
Membership is free. Funding for the organization comes from donations and grants, sponsorships, memorial donations, and fundraising activities led by IWSA member families and friends.
The mission of the IWSA is to
PROMOTE AWARENESS, STIMULATE RESEARCH, and SUPPORT FAMILIES
affected by WAGR syndrome
The IWSA works internationally to raise awareness and increase knowledge in the medical and research communities as well as for families caring for individuals with WAGR syndrome. The IWSA promotes awareness by:
The IWSA is dedicated to improving the lives of individuals with WAGR syndrome. Research is the key to identifying and understanding the many complications and challenges associated with this disorder--and to ultimately develop effective therapies and treatments. The IWSA does not directly fund research activities, but works to collaborate with and support researchers interested in WAGR syndrome.
The IWSA stimulates and encourages research by:
Facing the difficult diagnosis of a rare disorder like WAGR syndrome can be isolating and confusing. The IWSA is dedicated to supporting families around the world beginning at diagnosis and throughout their child's lifetime. A team of international volunteers focuses on providing information, support, and hope to all families affected by WAGR syndrome.
Some of the ways family support is provided include:
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