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Guidebook for Caregivers of Children with Rare and/or Serious Illness

Rare diseases affect nearly one in 10 Americans, and more than half of those affected are children. The urgency and pressures faced by parents, siblings or loved ones caring for a child with a rare disease are immense and constant. The Circle of Care Guidebook will help Caregivers more easily navigate through the needs and challenges of caring for children with rare and serious illnesses, and find the right next steps to take on their behalf.

Making Informed and Shared Decisions About Genetic Testing and Clinical Trial Participation

Knowing how to make shared decisions is valuable throughout your rare disease journey. But it’s especially helpful when you’re making choices related to genetic testing, gene therapy, and participating in clinical trials for therapies in development. More than 70 percent of rare diseases are genetic in origin. Our knowledge about these diseases and how to treat them is growing rapidly. But there is still so much that is not known. There are rarely clear answers—and the answers we have are never “one size fits all.”In this toolkit, you’ll learn how to consider what’s right for you—and how to apply shared decision-making skills to the choices you make related to genetic testing and gene therapy clinical trials.

Courageous Parents Network

Courageous Parents Network (CPN) is a 501(c)(3) nonprofit organization and digital platform developing and publishing resources to help parents and providers caring for seriously ill children mutually understand each other; communicate more effectively; make decisions together--and in so doing, change and improve the patient, family and provider experiences. 

  • More than 500 videos and podcasts of families and providers discussing a wide range of subjects, from diagnosis to family care to advance care planning to bereavement.

  • Downloadable guides to help families navigate the care “system” and important decisions; podcasts; curated modules on topics of particular interest; and a blog.

  • Provider Portal, a section of CPN that includes content on best practices in communicating and shared decision-making, and a Video Search Tool for easy, convenient identification of materials to share with patients and colleagues.

Listening, Reflecting, Healing

Mary-Frances Garber, MS, CGC is a Licensed Genetic Counselor. Her counseling is intended to complement the more traditional genetic counseling that is offered in medical centers. Her focus is on the emotional responses patients and their partners may have following various obstetrical, pediatric or adult genetic concerns.

Each person is unique in the way they respond to these issues. Supportive genetic counseling may involve a one-time visit or multiple sessions, whatever it takes to initiate healing and moving forward. Patients are seen in a private office setting in Needham, Massachusetts or via a HIPAA compliant telemedicine platform.

 

Rare Siblings Project

An exploration of what it means to have a sibling with a life-threatening illness.

When a child in the family has a rare and life-threatening illness, the entire family is affected, especially the child’s brothers and sisters. These siblings have deep feelings, questions, worries. Their experience is very unique and they often feel different and isolated from their peers. They are also proud, dedicated and loving of their sibling who is sick. And they can be wise beyond their years.

NORD Caregiver respite program


Through the program, NORD will provide financial assistance to eligible caregivers covering up to $500 annually so that a respite caregiver may be secured to care for a loved one.

Article: Grief For Beginners: 5 Things To Know About Processing Loss

Article from NPR which we hope would be comforting to those dealing with grief and loss

Once Upon A Gene Podcast

 

This is a podcast that explores the world of raising children with disabilities and rare genetic disorders. Host, Effie Parks, shares her own personal story of raising a child with CTNNB1 syndrome, while trying to find the non-existent rule book of bringing up such a special kid. This podcast features interviews with fellow parents, therapists, doctors and anyone else who wants to share their story.