Parenting a child with a rare disease can cause isolation. Parent to parent networks like PMSF can provide support, resources and comfort to a caregiver. Below are parent resource groups that may be active in your local area.
+ http://www.autismspeaks.org/ A state-by-state resource guide for children's and adult services.
+ http://caregiveraction.org/ The Caregiver Action Network(CAN) is a family caregiver organization working to improve the quality of life for the than 90 million Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age.
+ http://caregiver.org Family Caregiver Alliance supports and sustains the important work of families nationwide caring for adult loved ones with chronic, disabling health conditions.
+ http://www.themighty.com/ The Mighty is real people who face disability, disease and mental illness together.
+ http://courageousparentsnetwork.org/ The Courageous Parents Network supports parents and families of children living with serious illness with the skills, tools and virtual support they need to cope and adapt during their child’s illness journey.
+ http://www.eparent.com Exceptional Parent (EP), a specialized magazine now in its 42 year, provides practical advice, emotional support and up-to-date information for families of special needs children. Among EP’s multi-media offerings include their monthly magazine, Resource Guide, web site, accredited seminars and teleconferences and the World Congress on Disabilities international conference.
+ http://globalgenes.org/toolkits The Global Genes organization is one of the leading rare disease advocacy organizations, with global reach to the worldwide rare community of patients, caregivers, advocates and clinical partners. Their site features a variety of toolkits that cover a range of topics such as pediatric palliative care, parenting a child with a life-limiting illness, genetic testing, and legislative advocacy.
+ http://mommiesofmiracles.com/ Mommies of Miracles is the worlds largest virtual support group for mothers of children who have medical complexities or developmental disabilities.