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

The National Alliance for Caregiving, with Support from Mallinckrodt Pharmaceuticals and in partnership with Global Genes, Releases a Guidebook Addressing Caregivers’ Needs as They Care for a Child Living with a Rare and/or Serious Illness

Washington, D.C.—August 5, 2021—The National Alliance for Caregiving (NAC) has released a new publication for friends and family who care for a child with a rare and/or serious disease. The Circle of Care Guidebook for Caregivers of Children with Rare and/or Serious Illnesses addresses the many ups and downs of caring for a child living with advanced illness and medical complexity, offering new resources, personal stories, and evidence-based insight to the care journey. Of the approximate 30 million Americans who have a rare and/or serious illness, about 50% of them are children.

A 2018 study from the National Alliance for Caregiving and Global Genes, which surveyed 1,406 family caregivers caring for an adult or child with a rare disease or condition, found that 62% of these caregivers were caring for a child under the age of 18. The study found these caregivers need a high level of expertise to perform their role, requiring access to an amount of specialized information that can be hard to find without support. The findings highlighted in that study, along with listening sessions held with caregivers of children with rare and/or serious illnesses, helped inform the content of The Circle of Care Guidebook for Caregivers of Children with Rare and/or Serious Illnesses. The guidebook was created with support from Mallinckrodt Pharmaceuticals, and in partnership with Global Genes. The guidebook is available at https://www.caregiving.org/guidebook-for-caregivers-of-children-with-rare-serious-illnesses/.

“There are few life experiences more existentially challenging than caring for a child with a rare, serious, or life-altering illness,” said C. Grace Whiting, President and CEO of the National Alliance for Caregiving. “We hope that this guidebook can provide some insight and guidance during the dark moments facing so many families and lessen the administrative burden of care. If we can give back just one hour of time to be present to a parent and child, a sister and brother, a grandparent and grandbaby by saving the caregiver time, we’ll know we’ve made a positive impact for this community.”

This Circle of Care Guidebook was created for family caregivers, by family caregivers, in order to provide a comprehensive set of resources, guidance, and information on aware­ness initiatives that emphasize and advocate for the needs of families with a child with rare and/or serious illness. “Rare disease caregiving comes with its own set of unique challenges,” said Katie Sacra, family caregiver and Director of Family Programs at the Global Foundation for Peroxisomal Disorders. “Caregivers themselves have created this book to not only pass the torch of advice, but to illuminate the path for you to know you are not alone in the dark.”

Among many, the topics addressed in this guidebook include:

  • 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.

There is also an appendix with a comprehensive list of online resources, supports and services for caregivers, the child living with the rare and/or serious illness, and their family that are referenced throughout the guidebook. In the development of this guidebook, the National Alliance for Caregiving enlisted the expertise of an advisory committee and expert reviewers who are rare disease specialists, including advocates, researchers and those belonging to rare disease organizations, including: Kathryn Devanny, MA, MPH; Chris Feudtner, MD, PhD, MPH; Megan Thomas Hebdon, PhD, DNP, RN, FNP-C; Maureen Lyon, PhD; Annie Kennedy; Melisa Lopez; Ellen Miller-Sonet; Jennifer Siedman, M.Ed; Laurie J. Turner; and Leslie Urdaneta, MSW, LCSW. This guidebook was written by family caregivers who have had experience with rare disease, including: Mousumi Bose, PhD; Kimberly Haugstad, MBA; and Theresa J. Smith, AS, LPN, CCRC.

If you or someone you know is a caregiver of a child with a rare and/or serious illness, visit https://www.caregiving.org/guidebook-for-caregivers-of-children-with-rare-serious-illnesses/ to learn more and access important resources.

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About the National Alliance for Caregiving:
NAC’s mission is to build partnerships in research, advocacy, and innovation to make life better for family caregivers. Our work aims to support a society which values, supports, and empowers family caregivers to thrive at home, work, and life. As a 501(c)(3) charitable non-profit organization based in Washington, D.C., we represent a coalition of more than 60 non-profit, corporate, and academic organizations; nearly 40 family support researchers with expertise in pediatric to adult care to geriatric care; and more than 50 advocates who work on national, state and local platforms to support caregivers across the United States. In addition to our national work, NAC leads and participates in a number of global meetings on caregiving and long-term care, working closely with peer organizations in countries such as Australia, Canada, Denmark, Finland, France, Hong Kong, India and Nepal, Ireland, Israel, Japan, New Zealand, Sweden, Taiwan, and the United Kingdom.

About Mallinckrodt Pharmaceuticals:
Mallinckrodt is a global business consisting of multiple wholly owned subsidiaries that develop, manufacture, market and distribute specialty pharmaceutical products and therapies. The company’s Specialty Brands reportable segment’s areas of focus include autoimmune and rare diseases in specialty areas like neurology, rheumatology, nephrology, pulmonology and ophthalmology; immunotherapy and neonatal respiratory critical care therapies; analgesics and gastrointestinal products. Its Specialty Generics reportable segment includes specialty generic drugs and active pharmaceutical ingredients. To learn more about Mallinckrodt, visit www.mallinckrodt.com.

About Global Genes:
Global Genes is a 501(c)(3) nonprofit organization dedicated to eliminating the burdens and challenges of rare diseases for patients and families globally. In pursuit of our mission, we connect, empower, and inspire the rare disease community to stand up, stand out, and become more effective on their own behalf ⁠— helping to spur innovation, meet essential needs, build capacity and knowledge, and drive progress within and across rare diseases. We serve the more than 400 million people around the globe and nearly one in 10 Americans affected by rare diseases. If you or someone you love has a rare disease or are searching for a diagnosis, contact Global Genes at 949-248-RARE or visit www.globalgenes.org.

 

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