It’s hard enough on family caregivers when their child receives a new diagnosis. The challenge is made even more difficult when the condition is rare.
What are rare disorders?
Rare disorders affect only a small number of individuals. It may be daunting for family caregivers to try to find information that’s scarce. There are many websites for health conditions, but not a lot that cover rare conditions.
Where is reputable information available?
Ø If parents find out that their child has an unusual condition, there is good information available from the National Institutes of Health.
Ø The National Organization for Rare Disorders has a searchable database.
Ø For chromosomal disorders, there are descriptions of genetic testing and conditions available from Unique.
A Note on Genetics
There are many good resources available and parents may feel relieved if the child’s symptoms finally “have a name.” If it does turn out to be a genetic condition, other resources (besides Unique listed above) can be helpful:
· Explaining the basics of what genetics means for families is Genes in Life.
· The Genetic Alliance has various resources, including “Children and Youth with Special Healthcare Needs in Healthy People 2020: A Consumer Perspective.”
· There is even information regarding children with developmental or other disabilities who need organ transplants available from the Boggs Center.
A Final Word on Support
Sometimes family caregivers need to talk to another parent “who has been there.” Many of the disability specific organizations may have support groups or match parents. An excellent resource that matches trained volunteer parents to families of children with the same or similar condition is Parent-to-Parent.
Family caregivers won’t feel so helpless or hopeless if they find out information on their child’s condition and learn how to handle it. If parents know what to expect, they can take better care of their child, resulting in better health outcomes for their child.
National Institutes of Health-Rare Diseases
National Organization for Rare Disorders
Boggs Center-transplants and disability
Genes in Life
Lauren Agoratus is a parent/advocate who works for the Statewide Parent Advocacy Network and serves as the NJ Coordinator for Family Voices (www.spanadvocacy.org), a national network that works to “keep families at the center of children’s healthcare” at www.familyvoices.org or FB www.facebook.com/pages/Family-Voices-Inc-National/137783182902269. She also serves as NJ representative supporting caregivers across the lifespan for the Caregiver Action Network (formerly National Family Caregivers Association) in a volunteer capacity at http://caregiveraction.org/ or FB www.facebook.com/CaregiverActionNetwork.