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The National Alliance for Caregiving, in partnership with Global Genes, has published a free guide, available online, that offers resources and support for caregivers of children with rare diseases.

Circle of Care Guide for Caregivers of Children with Rare and / or Serious DiseasesWas designed by and for family caregivers so they don’t feel “alone in the dark,” according to a press release from Global Genes announcing its publication.

The new guide covers nearly 100 topics related to caring for a child with a rare disease and features personal stories, a comprehensive set of resources for caregivers, and information on awareness and advocacy initiatives.

It is estimated that about 30 million Americans are living with a rare and / or serious illness, and about half of them are children, according to the alliance.

“Providing care for rare diseases comes with its own unique set of challenges,” said Katie Sacra, family caregiver of an adult son with a rare disease and director of family programs at the Global Foundation for Rare Disease. peroxisomal disorders.

“The caregivers themselves have created this book not only to pass on the torch of counseling, but to light the way for you to know you are not alone in the dark,” said Sacra, who wrote the letter. Welcome “presented at the beginning of the book.

The National Alliance and Global Genes teamed up in 2018 for a survey of 1,406 family caregivers in the United States who were providing care to someone with a rare disease.

Rare Disease Care in AmericaThe resulting study found that 62% of caregivers were caring for a child under the age of 18. These caregivers need a high level of expertise to provide adequate care. They also needed access to specialized information, which can be difficult to find without assistance.

The results of the study, along with the listening sessions conducted with caregivers of children with rare diseases, helped shape the content of the new guide, published with support from Mallinckrodt Pharmaceuticals. In addition, the National Alliance has relied on the advice of an advisory committee and expert reviewers, including advocates, researchers and members of rare disease organizations.

“There are few life experiences more existentially difficult than caring for a child with a rare, serious or life-changing illness,” said C. Grace Whiting, President and Chief Executive Officer from the leadership of the National Alliance for Caregiving.

The guide covers the process of getting an accurate diagnosis for a rare and / or serious disease, providing “useful websites” and information on testing programs. It also includes information on treatment and care coordination, covering genetic testing, clinical trials and support groups.

Designed in part to help caregivers advocate for patient care and support, the 59-page publication provides an overview of the cost of treatment and includes sections on copay help, government support and other aids. financial.

In addition, it covers ways in which caregivers can empower their children to manage their disease in all aspects of their lives as they grow up, and how caregivers can take care of themselves and their children. family. One section is titled “Achieving Quality of Life as a Family Managing Rare and / or Serious Diseases”, while another, titled “Education and Recreation” offers information on summer camps, among other programs.

“We hope this guide can provide information and advice during the dark times facing so many families and ease the administrative burden of care,” said Whiting. “If we can give back just an hour of time to be present for a parent and child, a sister and a brother, a grandparent and a grand-baby while saving the caregiver time, we will know that we have had a positive impact for this community. “

The guide also includes an appendix with a comprehensive list of resources, services and supports for caregivers, children living with rare diseases and their families.

“Rare diseases are often complex and require a multidisciplinary approach to be effective, which is why this inclusive guide is a tool all caregivers should have access to,” Sacra wrote in her welcome letter. “Whether you’re a new or seasoned caregiver, you’ll find another caregiver to walk you through this guide. “

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