Children and Youth with Special Health Needs (CYSHN)Family Support and Networking |
Parent support groups support families of children born with conditions identified through the newborn screening program. The support group helps by providing support, assistance, education, and resource information. Each group meets at different times and locations. Contact information is included for further information.
| Minnesota Hands and Voices: |
We Share Your Experience as parents, MN Hands and Voices staff is passionate about the lives of our children who are deaf and hard of hearing. We too face many of the same joys and challenges and our unique perspective allows us to be an entry point to services and to experts in the field. We build better lives for children who are deaf and hard of hearing by providing parent-to-parent support to families. For the Minnesota Hands and Voices web site go to: www.mnhandsandvoices.org A printable brochure about Minnesota Hands and Voices is also available at: http://www.familysupportconnection.org/pdf/MN%20Hands%20&%20Voices.pdf (PDF:2 pages / 490KB) |
| Family Voices of Minnesota: |
Family Voices of Minnesota is a grass roots family organization that aims to achieve family-centered care for all children, youth and young adults with special health care needs and/or disabilities. Through our state and national networks of families and providers, we provide tools that build partnerships among professionals, patients and families, and serve as a trusted resource for information to improve health system policies. For the Family Voices web site go to: http://familyvoicesofminnesota.org/ |
| Congenital Adrenal Hyperplasia [CAH] Family Support Group And Fatty Acid Oxidation Disorders [FAOD] Family Support Group |
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Each of these family groups supports parents of children born with CAH/FAOD and mothers found with FAOD. They meet twice a year. One session focuses on education and the other is a social event. Both events provide a way to meet other parents for discussion and support. All parents and grandparents are welcome! These parent support groups also offer training for volunteer parents to learn how to provide parent-to-parent contacts to families with an infant who has been newly diagnosed with one of these disorders. Contact: Children and Youth with Special Health Needs (CYSHN) at health.cyshn@state.mn.us or |
| Sickle Cell Disease [SCD] Support Group |
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Families of infant, children and youth with Sickle Cell Disease are encouraged to contact the Sickle Cell Disease [SCD] Support Group (Sickle Cell Disease Advocates of Minnesota) at www.scdam.org |
| Minnesota PKU Foundation Support Group |
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For information visit the website http://www.peds.umn.edu/pku/ and click on Minnesota Families for current activities and events. |
| Cystic Fibrosis [CF] Community Parent Support Group |
| The CF Community Parent Support Group is a place for parents of children with cystic fibrosis to come to for support and information. This group meets one evening a month.
Families of infant, children and youth with Cystic Fibrosis are encouraged to contact their medical specialty center for information and contact name/numbers for this support group. |
| Galactosemia Support Group |
| The purpose of the group is to share information about the disorder and to get families in touch with each other for support and education. You can find useful information at the website: http://www.galactosemia-mn.com/ |
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Medical Specialist Resource Lists
If you have questions or comments about this page, please contact Children and Youth with Special Health Needs at health.cyshn@state.mn.us
