Helpful Organizations

There are many helpful organizations that provide support for families managing Hunter syndrome. Whether you are looking for advocacy groups, government programs, or community support, explore the list of valuable resources below.

Angel’s Hands Foundation

Angel’s Hands Foundation mission is to improve the quality of life for individuals living with rare diseases. It supports families by assisting with lingering medical expenses, funding medical equipment not covered by insurance, funding family visits to educational events or to see medical specialists, sponsoring fundraising events, and hosting social outings for families.

Family Voices

Family Voices is a national grassroots network of families, friends, and advocates for healthcare services that are family-centered, community-based, comprehensive, coordinated, and culturally competent for all children with special healthcare needs. Family Voices promotes the inclusion of all families as decision makers at all levels of healthcare, and supports essential partnerships between families and professionals.

Genes In Life is a place to learn about all the ways genetics is a part of your life. On this site, you can learn how genetics affects you and your family, why you should talk to your healthcare providers about genetics, how to get involved in genetics research, and much more.

Genetic Alliance

The Genetic Alliance is a nonprofit health advocacy organization committed to transforming health through genetics and promoting an environment of openness centered on the health of individuals, families, and communities. Genetic Alliance’s network includes more than 1,200 disease-specific advocacy organizations, as well as thousands of universities, private companies, government agencies, and public policy organizations.

The Global Genes Project

The Global Genes Project is a leading rare and genetic disease patient advocacy organization with over 500 global organizations. The non-profit organization is led by Team R.A.R.E. and promotes the needs of the rare and genetic disease community. The Global Genes Project’s mission is centered on increasing rare disease awareness, public and physician education, building community through social media and supporting research initiatives to find treatments and cures for rare and genetic diseases.

Individuals with Disabilities Education Act (IDEA)

The Individuals with Disabilities Education Act (IDEA) is a law ensuring services to children with disabilities throughout the nation. IDEA governs how states and public agencies provide early intervention, special education, and related services to more than 6.5 million eligible infants, toddlers, children, and youth with disabilities.

The National Dissemination Center for Children with Disabilities (NICHCY)

Families, educators, administrators, journalists, and students can benefit from the NICHCY’s services. The organization’s special focus is children and youth (birth to age 22).

National MPS Society

The National MPS Society supports scientific research, provides family support, and strives to increase public and professional awareness of MPS disorders. The Society provides helpful MPS resource guides, forums for emotional support, and an annual family conference for families to meet and learn more about their disease. The Society’s efforts also include raising money to fund MPS research projects, sponsoring public events, and working with the government to advocate for support programs.

National Organization for Rare Disorders (NORD)

The National Organization for Rare Disorders (NORD) is a unique federation of voluntary health organizations dedicated to helping people with rare “orphan” diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service. NORD was established in 1983 by patients and families who worked together for the passage of the Orphan Drug Act. This legislation provides financial incentives to encourage development of new treatments for rare diseases.

Partners in Policy Making

In May 1987, the Minnesota Governor’s Council on Developmental Disabilities created an innovative training program called Partners in Policymaking® to teach parents and self-advocates the power of advocacy, and change the way people with disabilities are supported, viewed, taught, live and work. Online courses include Partners in Making Your Case, a self-study program designed to help people advocate for positive changes in public policies that impact people with developmental disabilities and their families.