Medical/Health and Wellness Resources
Global Genes is a non-profit organization dedicated to eliminating the burdens and challenges of rare diseases for patients and families globally. It aims to connect, empower and inspire the rare disease community.
The Global Genes website includes a RARE Portal, which is an online community for patients, caregivers and more to share resources and create discussion groups.
Good Samaritan Ministries in Carbondale
Good Samaritan Ministries assists families and individuals in need in the Carbondale area. Programs and services include:
- Emergency assistance
- An emergency shelter and transitional housing
- A soup kitchen
- Food pantry
For questions, please contact the Good Samaritan House in Carbondale.
Got Transition aims to help youth and young adults move from pediatric to adult health care. Its website includes frequently asked questions and resources for youth and young adults as well as parents and caregivers.
The site also includes an animated video “What is Health Care Transition? HCT 101” for youth, young adults and families.
Granted helps “wishes” come true for children in southeast Illinois, southern Indiana and western Kentucky with terminal or life-threatening conditions. The non-profit aims to give children and their families respite from the physical, emotional and financial toll of a life-threatening illness. Granted’s wishes aim to to provide strength, hope, joy and a wonderful experience that the family can enjoy together and treasure among their memories.
Granted’s services also include events throughout the year, support groups and resource referrals for families in crisis. The organization serves a 100-mile radius of Evansville, Ind. See a map of Granted’s service area.
For questions, please contact Granted online.
Grupo SALTO (Sociedad de Autismo Latina Trabajando con Optimismo) aims to provide support in Spanish for Latino families who have children who are differently abled, with a focus on autism.
Grupo SALTO provides culturally and linguistically appropriate training, education and services.
Guidance for Responding to Incidents Involving Missing Children with Autism
The International Association of Chiefs of Police (IACP) provides law enforcement and caregivers with guidance on preparing for and responding to incidents involving missing children with autism. Information includes:
For questions, email IACP at homesafe@theiacp.org.
Hands & Voices is a non-profit, parent-driven organization dedicated to supporting families of children who are deaf or hard of hearing. They are non-biased about communication methodologies and believe that families can make the best choices for their children if they have access to good information and support.
Hands & Voices Guides and Resources for Deaf/Hard of Hearing Plus
Hands & Voices provides a variety of resources specific to children who are deaf/hard of hearing plus – the combination of being deaf or hard of hearing and having additional medical complexities or other needs.
Information includes the “Connecting Families of Children who are Deaf or Hard of Hearing Plus (DHH Plus) with Resources and Support” guide, an Educational Plan Checklist for D/HH-Plus Students and presentations, articles and other guides for families of children who are D/HH plus.
Hands & Voices Virtual Waiting Room
Hands & Voices virtual waiting room provides resources and connections for families with children who have been referred to or are in the care of an audiologist and who are receiving those services through technology or “telehealth.” Much of the information is also useful for families who are preparing for onsite visits.
Hands & Voices virtual waiting room includes:
- A video about the importance of next steps when your child is referred for more testing after a hearing screening
- A guidebook for parents about audiology and telehealth
- Information about tele-audiology options
- Questions to ask your audiologist, understanding your child’s audiogram, help making decisions with communication and more
- Connections to family-to-family support from trained parent leaders
- Explanations of help offered by a variety of professionals in addition to your child’s audiologist
- Resources to promote health and well-being for you and your child
- A link to email a Hands & Voices trained parent who can answer your questions and direct you to additional resources
Healing Horse Stables in Sidney, Ill., is a non-profit organization offering therapeutic riding and equine-facilitated learning for individuals of all ages and abilities. Healing Horse Stables promotes learning and physical, social and emotional well-being through programs that include:
- Therapeutic riding
- Riding for relaxation
- Horsemanship programs
- Field trips
For questions, fill out the Healing Horse Stable online form or email healinghorsestables@gmail.com
