Resources, Tools for Parents of Children with Rare Diseases

Resources_Rare_DiseasesParents often struggle with navigating how to raise a child with rare or genetic diseases. CHOC provides multiple channels of support including family-centered care, which empowers parents to become as educated as possible on their child’s condition.

To help on that front, the Global Genes Project – an Alieso Viejo-based organization whose mission is to support, advocate and educate patients and parents of those with rare and genetic illnesses – recently published a series of unique “toolkits” that lay out some previously unwritten rules for patients and caregivers.

The kits cover a variety of topics that can help parents of children with rare diseases:

Parenting a Child with a Life-Limiting Illness: This toolkit gives advice in multiple formats like video, parent-to-parent stories and resources for challenges like caring for the sibling of a sick child, maintaining a marriage through the course of a child’s illness, involving extended family and friends, and understanding medical equipment.

Bringing Rare Disease to Capitol Hill, Advocating for Your Cause: With so many regulations in constant motion, it’s important for parents to do their part in advocating for rare disease support and studies. This toolkit outlines how congress works to produce bills and laws and change regulations in the United States.

Starting a Non-Profit, The First Steps: Some parents may even go as far as wanting to start their own non-profit organization to help make waves for a particular illness. This kit gives readers the main idea of what a non-profit is, what it can accomplish and how it’s formed.

These kits, and others, can be found online at

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One thought on “Resources, Tools for Parents of Children with Rare Diseases”

  1. Hello my name is Stephen Swaggerty and my 4 year old daughter was just diagnosed with episodic ataxia type 2 about a year ago. I am looking for parents that have a child with the same rare disease so I can talk to them about similarities or possibly find a group to share things that work or dont work. Thank you.

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