Marion Resources
NORD: National Organization for Rare Disorders
The National Organization for Rare Disorders (NORD) offers support, information and a variety of events for clinicians, researchers, patients and families affected by rare diseases.
NORD’s Resource Center provides patients and caregivers with free webinars, fact sheets, infographics, links to support and advocacy groups, and referrals for many rare disorders.
NORD’s RareCare Program website provides a list of financial assistance programs that can help patients obtain life-saving or life-sustaining medication they could not otherwise afford.
NORD’s State Resource Center contains local, state and national organizations listed by state or by topic offering free or low-cost services for people impacted by rare diseases.
ComeUnity is a parent support website with resources on parenting children with special needs, adoption, child development and multiple lists of groups and organizations providing information on specific topics or areas.
Visit www.comeunity.com/index.html.
PACER Center is a parent training and information center for families of children and youth with all disabilities from birth to young adults. It serves families across the nation.
Parents can find publications, workshops and other resources to help make decisions about education, vocational training, employment and other services for their children with disabilities.
American Cleft Palate – Craniofacial Association
The American Cleft Palate – Craniofacial Association (ACPA) is a non-profit association of individuals and healthcare professionals who are interested in clinical care and research advancements for those affected by cleft and craniofacial conditions.
ACPA provides important information for families, patients and professionals on topics associated with cleft or craniofacial care as well as educational materials in English and Spanish, scholarship information and more.
Home modification refers to converting or adapting the environment in order to make performing tasks easier, reduce accidents, and support independent living.
Homemods.org has compiled a variety of resources on home modification resources to provide education, training and information for your own home modification needs.
Center for Parent Information and Resources (formerly NICHCY)
The Center for Parent Information and Resources is a national information and referral center on disabilities and related issues (formerly the National Information Center for Children and Youth with Disabilities or NICHCY). Information is available in Spanish also.
Universal Telephone Assistance Program
Linkup and Lifeline are two federally funded programs that assist families with paying for telephone installation and monthly service. Eligibility requirements apply.
College Illinois! 529 Prepaid Tuition Program
The College Illinois! Prepaid Tuition Program was established in 1997 to help make college a reality for Illinois families. College Illinois! helps to lock in the cost of college by allowing Illinois families to prepay for future tuition at today’s plan rates.
Illinois Hands & Voices is a parent-driven, non-profit organization dedicated to helping families with children who are deaf and hard-of-hearing.
Families can learn about the variety of resources and options available to them and how to access them. Through this network of resources, families can make informed decisions about their future in regards to educational options, the changing landscape of assistive technologies and many other issues facing families with children who are deaf and hard of hearing.
Families within the same geographic region within the state can share experiences and information as they support each other. They can receive the opportunity to gain knowledge and direction from families who have faced the same challenges and choices.
Illinois Early Intervention Clearinghouse
The Illinois Early Intervention Clearinghouse is a lending library and information resource for families and professionals interested in or involved with the Illinois Early Intervention (EI) Program. It also provides support groups in English and Spanish for families involved in the Illinois early intervention program on Facebook.
The Illinois Early Intervention Clearinghouse offers:
- Tip sheets and guides for families
- A family support group on Facebook for both English and Spanish-speakers
- Resources for EI staff and providers
- A lending library