New Guidebook for Caregivers of Children with Rare and/or Serious Illnesses

​Many HCAOA member agencies provide care to children with serious illnesses. Please be sure to share this new resource, The Circle of Care Guidebook for Caregivers of Children with Rare and/or Serious Illnesses, with your caregivers. The National Alliance for Caregiving in partnership with Global Genes and with support by Mallinckrodt Pharmaceuticals recently released this guidebook to provide caregivers with the support, services, and specialized information they need to care for a child with a rare and/or serious illness. The guidebook offers an extensive list of resources to help a caregiver in any situation throughout the entirety of their journey as a rare disease caregiver, compiled by those in the rare disease space and caregivers themselves. ​

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The Guidebook covers: 

• The process of getting an accurate diagnosis for a rare and/or serious illness;
• Genetic testing, clinical trials and support groups that can help;
• Information on treatment and care coordination with specialized teams;
• Understanding the cost of care and treatment;
• Advocating for your child, their care and in their disease space;
• Empowering your child to manage their rare and/or serious illness through all aspects of their life, including when they become an adult; and
• Caring for yourself and your family.
  
  

Click here to learn more and access important resources.