Rare Disease Day is February 28, 2022. Rare Disease affects 300 million people around the world, or about 3.5-5.9% of the global population. Since 2008, Rare Disease Day has been held on the last day of February to internationally coordinate on working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with rare disease. To learn more about Rare Disease Day and find out more about how you can show your support or participate on the day itself, please visit https://www.rarediseaseday.org/.
As an organization dedicated to supporting the needs of family caregivers, we at the National Alliance for Caregivng would like to show our support for the rare disease community by sharing a resource we developed to provide information and resources for family caregivers.
The Circle of Care Guidebook for Caregivers for Children with Rare and/or Serious Illnesses, designed in partnership with Global Genes and with support by Mallinckrodt Pharmaceuticals, provides caregivers with the support, services and specialized information they need to care for a child with a rare and/or serious illness. Compiled by those in the rare disease space and caregivers themselves, this 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. The list is supplemented by the specialized information needed in order to care for a child with a rare and/or serious illness..
You’ll learn about:
- 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.
A comprehensive list of online resources, supports and services for caregivers, the child living with the rare and/or serious illness, and his or her family concludes the guidebook.
If you or someone you know cares for a child living with a rare and/or serious illness, please download the guidebook here.
