Caring for AHC
People who look after someone with an uncommon disease, such as AHC, face unique challenges. AHC patients typically see several specialists who have little experience with AHC patients. A patient living with AHC has less information, fewer resources, and more obstacles to accessing the right treatment.
To help AHC caregivers, whether they are doctors, nurses, therapists, family members, or friends, the Foundation is working to develop resources intended to provide some perspective on caring for AHC patients.
Care Plans will be developed and shared in this area when they are available. We will announce the new content via our networking outlets when they are available. In the meantime, please utilize the resources curated below.
Resources for Caregivers for People with Rare Diseases
By definition, rare diseases affect fewer than 200,000 people, according to the National Organization for Rare Disorders (NORD). So it’s not surprising that being a caregiver for someone with AHC can feel isolating at times. Fortunately, awareness is spreading about not only people with rare diseases but also the caregivers who commit to improving their lives. Resources and support systems exist today that were nowhere to be found just a decade or two ago. Here’s an important look at rare caregivers.
- Caregiver Action Network: caregiveraction.org; 855-227-3640
- Child Neurology Foundation: childneurologyfoundation.org; 888-417-3435
- EveryLife Foundation for Rare Diseases: everylife foundation.org; 202-697-RARE
- Global Genes: globalgenes.org; 949-248-RARE
- National Alliance for Caregiving: caregiving.org; 202-918-1013
- National Institute of Neurological Disorders and Stroke: ninds.nih.gov; 800-352-9424
- National Organization for Rare Disorders: rarediseases.org; 203-744-0100
- NeuroTalk: neurotalk.org
