Resources
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.
- MPS Societies
- The National Organization for Rare Disorders
- The Rare Disease Community
- The National Dissemination Center for Children with Disabilities
- Genetic Alliance
- Individuals with Disabilities Education Act (IDEA)
- Family Voices
- Partners in Making Your Case
- Angel's Hands Foundation
- Community Voices
MPS Societies
There are more than 20 societies around the world that provide family support, advance scientific research, and increase public and professional awareness of MPS.
Many of the societies provide MPS resource guides, host national and regional conferences for families to meet and learn more about their disease, and provide forums for emotional support. Society efforts also include raising money to fund MPS research projects, sponsoring public events, and working with government to advocate for enhancements to support programs.
The National Organization for Rare Disorders
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.
The Rare Disease Community
The National Organization for Rare Disorders (NORD) has helped to launch a free, online community service for rare-disease patients, their families, and caregivers. The Rare Disease Community is a place where people can find and support one another, share stories, and build a network of online friends — all within a safe, secure environment. Participants benefit from a sense of belonging to a community, finding practical advice, and giving and receiving emotional support.
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).
The NICHCY serves the US as a central source of information on:
- disabilities in children and youth;
- programs and services for infants, children, and youth with disabilities;
- IDEA, the nation's special education law;
- No Child Left Behind, the nation's general education law; and
- research-based information on effective practices for children with disabilities.
Genetic Alliance
The Genetic Alliance is dedicated to improving the quality of life for everyone living with genetic conditions by increasing funding for research, access to services, support for emerging technologies, and by leveraging the voices of millions of individuals and families living with genetic conditions.
As a coalition of more than 600 genetic advocacy organizations serving 25 million people affected by 1000 conditions, the Genetic Alliance has been promoting advocacy, education, and empowerment for its support groups for more than 20 years.
The Genetic Alliance Web site offers many informational resources, including regular newsletters, bulletins, and guides for anyone affected by a genetic disease.
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.
Learn more about IDEA and IEP at the official website:
Family Voices
Family Voices is a national grassroots network of families, friends, and advocates for health care services that are family-centered, community-based, comprehensive, coordinated, and culturally competent for all children with special health care needs. Family Voices promotes the inclusion of all families as decision makers at all levels of health care, and supports essential partnerships between families and professionals.
Partners in Making Your Case
Partners in Making Your Case is a self-study course designed to help people with developmental disabilities and their families create positive change through advocacy. For more than 20 years, graduates of this online course have used their newly acquired advocacy skills to bring about major policy changes at all levels of government in the United States and the United Kingdom. Their successes have improved the lives of people with developmental disabilities by:
- requiring school districts to include children with developmental disabilities in traditional schools
- helping families stay together through improved family support systems
- making parks and other recreational facilities and programs accessible to all citizens
- expanding home ownership for people with developmental disabilities
www.partnersinpolicymaking.com
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.
