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Resources for navigating a diagnosis and leading within your family.

The journey to a diagnosis is different for every family. You may receive a diagnosis quickly, or never receive a diagnosis; your path might be clear, or things may change as your child ages. You will be faced with making decisions that are right for your family. These resources will help you understand how to navigate the medical system, where to find additional resources, and understanding your unique journey.

BLOGS | If you have 10 minutes...

Rethinking ‘Normal’ by Valerie Colaveccchio

“I am the mom of a 17 year old boy named Parker. Parker was born with a rare genetic disorder called galactosemia. Parker is also visually impaired and has autism…that’s a mouthful, isn’t it? It gets easier saying all that, but it’s still a mouthful. It was a lot when he was born and it’s still a lot 17 years later, but I am here to tell you it gets easier. ”

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The Journey to Finding What Works for You, by Lynda Kazairwe

"I recommend that families find what works. It will look different for different families. I am typically introverted and have never been keen on sharing my personal life on social media; I found that smaller communities worked better for us."

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VIDEOS | If you have 20 minutes...

Navigating a Diagnosis, by Valerie Colavecchio

"Love that child, get to the doctors and everything else will fall into place"

Watch the Video here

The Diagnostic Journey with Lynda Kazairwe

"As human beings, we are all fashioned to serve in whatever way and if we're able to do that not just for our own family but for others, we all are better for it."

Watch the Video here

LEARNING MODULES | If you have 1 hour...

Navigating a Genetic Diagnosis

In this interactive virtual learning module, you will: Understand the importance of giving yourself time to process your experience and find community, recognize how to find information and make medical decisions and Identify next steps in your ongoing journey.

Complete the module here

Recorrido del camino del diagnóstico genético

In this interactive virtual learning module, you will: Understand the importance of giving yourself time to process your experience and find community, recognize how to find information and make medical decisions and Identify next steps in your ongoing journey.

Complete El Módulo Aquí


Choose your area of interest below to see the resources for each section: Individual, Family, Community, and Systems.

Individual

Understand and embrace your own capacity for leadership.

Family

Navigate the journey to a diagnosis and leading within your family.


About

The National Genetics Education and Family Support Center (Family Center) provides tools and resources to support family engagement and genetic services.

Contact info

4301 Connecticut Ave NW Suite 404 Washington, DC 20008-2369

[email protected]