For Families

NEW!

The Midwest Genetics Network is pleased to share our new Journey Through Diagnosis web app. Our unique, family-written website is for families of a child with a genetic condition. MGN families share their experiences to help you navigate the challenges and uncertainties that come with a new diagnosis and offer support and insights to guide you on your journey.

This web-based version of our guide is intended to empower families. It may not answer all your questions, but it can get you started. There is no right or wrong way to use the information. You can read start to finish, or just the parts of interest. There’s a lot of information, and some of it may not apply to you in the moment. You can come back, and revisit sections as needed.

You can also download a copy by clicking on the download icon in the top right of the website address bar. (The icon is shaped like a computer screen with a downward pointing arrow) If you download it on your phone, it will allow you access the information from your phone without requiring internet access. Once you click on the icon, follow your phone’s prompts to download and install the icon on your phone to access it at any time it is convenient for you.

For additional information on how to download the Journey Through Diagnosis Web App, follow the step-by-step instructions linked here.

Journey Through Diagnosis Web App

guide

Journey Through Diagnosis Guide

The Purpose of This Guide: The purpose of this guide is to provide information and support to families whose child has been identified with a genetic condition. This guide is written from the family perspective and includes information Region 4 Midwest families felt was important when facing a new diagnosis. The material includes advice and tips to help “guide” families on their journey.
 
 Who Created This Guide? Multiple families who have a child (or children) with a genetic condition wrote this guide. Some of those families learned of their child’s diagnosis prenatally, some through newborn screening, while others waited months or even years. Their children are affected by a wide variety of conditions including spinal muscular atrophy, cystic fibrosis, PMM2 congenital disorder of glycosylation, sickle cell disease, Pelizaeus-Merzbacher disease (PMD), MECP2 duplication syndrome, metachromatic leukodystrophy, Rett syndrome, phenylketonuria (PKU), Down syndrome, trisomy 18, chromosome 2p deletion, DYRK1A syndrome, and others. They share what they have learned and want to pass on to others from their experience.
 

Care Coordination: The Family Perspective

There is no standard definition of Care Coordination. In this video, Region 4 Midwest Genetics Collaborative shares their definition and demonstrates that parents play an important role in coordinating care for their child. Key concepts of care coordination are shared along with examples of why they are important.

Receiving A Diagnosis: The Journey from Cope to Hope

Parents often feel a range of emotions when they first find out their child has a genetic condition/disability. This video will show how they were able to move from initial feelings of frustration, fear and helplessness to moving forward to a place of action. A special thank you to the Region 4 Midwest Genetics Collaborative family representatives who agreed to be filmed and share their stories.

Partnering with your Doctor: The Medical Home Approach

Partnering with your Doctor: The Medical Home Approach is a guide to help families connect with their doctor, other medical professionals, and caregivers through a medical home. The guide is intended to be a user-friendly, hands-on tool to support families to move forward in obtaining and providing a medical home for their child. The guide provides definitions, examples, and tools to use when working with a doctor to develop a medical home and demonstrates how to seek culturally effective, compassionate care. It also provides a list of resources and links to organizations that support families and the medical home concept.

Now available in Spanish and Arabic. Please use the links below or contact us at info@region4genetics.org to request hard copies of guide.