support for families and healthcare providers
Online support - videos, guides, toolkits
Facebook group for patients, parents, and caregivers to their child/loved one with Leigh syndrome
Please join our Facebook group here
Parenting Children with Mitochondrial Disease: Finding Space for Parental Well-Being
Dr. Rachel Kramer is a clinical psychologist in a private practice. During our conference, "Empower and Inspire: Understanding and Accelerating Research for Leigh Syndrome", she gave a talk that provided realistic, actionable strategies to help parents find ways to care for themselves in the context of the unique and intense stressors presented by parenting a child with mitochondrial disease.
To view video on youtube click here
Child Neurologist New Visit Toolkit from Child Neurology Foundation
Fill out the Child Neurologist New Visit Toolkit prior to your first visit with a neurologist or when visiting a new neurologist.
Download the form, print it out and bring it to the visit with you. Keep an electronic or paper copy for yourself, as well. It will be a valuable resource to track your child’s journey and ensure the best quality of care.
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.
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.
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.
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
virtual or in-person support - support groups or one-on-one
Support groups and retreats for Rare Mothers by Angel Aid
Based in California and operating globally, ANGEL AID currently supports rare families across fifteen countries, with plans to connect and educate 3.5 million Rare Mothers™ by 2025. ANGEL AID provides mental health and wellness services to rare families through sustainable psychosocial training, transformative retreats, and a connective caregiver-to-caregiver multilingual network.
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.
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.
PROVIDER SUPPORT
Courageous Parents Network: Clinician portal
Providers are able to access professionally vetted and reviewed content to help:
Start difficult conversations with a family
Guide parents in anticipating and navigating new and difficult terrain
Promote the benefits of pediatric palliative care
Teach and train colleagues, broadening and deepening our understanding of the complexities of parenting a child who is seriously ill
Empathy training - to empower healthcare organizations to create a culture of empathy and drive measurable improvement in patient experience, quality of care, and employee wellness through online and live education.