RARE Toolkits

Below is a list of all of our current RARE Toolkits.

PARENTING A CHILD WITH LIFE-LIMITING ILLNESS
        
Introduction
Introduction

Introduction

Learning that your child has a life-limiting illness can be devastating. After learning the typical prognosis for the disease, it is not unusual to worry about the future and anticipate what’s to come. But with a slowly regressing illness, there is a lot of time to understand what you will need medically and emotionally. There will be time to connect with others and gain support; there will be time to explore treatment methods.

With a lot to learn, we hope this toolkit will serve as a great starting off point. Please be sure to check out all of the toolkit’s components (the Resource Guide and Inside Look) to learn more!

Parenting Children with Life Limiting Illness
This toolkit is based on a educational video National Tay-Sachs & Allied Diseases Association put together. To order this video, please go to: https://www.ntsad.org/index.php/infantile-a-juvenile-support/parenting-children-with-life-limiting-illness.

This toolkit is sponsored by:

AlexionAmylinBioMarinFeinstein Kein HealthcareGenzymeGlaxoSmithKlineParabase GenomicsPfizerShireSigma Tau PharmaceuticalsSiren InteractiveViroPharma

World Headquarters
28 Argonaut, Suite 150
Aliso Viejo, California 92656
949.248.RARE