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BORN A HERO Programs

We had our first National/International conference in 2020 for the 20 FGFR Syndromes that we support. The conference included world famous scientists in the FGFR world. The audience consisted of...

FGFR Syndromes- Collaborative Research Network

We had our first National/International conference in 2020 for the 20 FGFR Syndromes that we support. The conference included world famous scientists in the FGFR world. The audience consisted of…

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A curriculum that encourages kids to love and celebrate differences- cultural, racial, and medical. We want to familiarize kids with a variety of differences and share the value and beauty that these brings to our society. We want all involved...

ABC Kind Program

A curriculum that encourages kids to love and celebrate differences- cultural, racial, and medical. We want to familiarize kids with a variety of differences and share the value and beauty that these brings to our society. We want all involved…

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The Fair and Summit aim to educate, engage, and inspire our community about the importance of rare disease research, with the hopes that everyone who comes knows how they can support accelerated research in rare diseases...

Seattle Rare Disease Fair

The Fair and Summit aim to educate, engage, and inspire our community about the importance of rare disease research, with the hopes that everyone who comes knows how they can support accelerated research in rare diseases…

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One of NORD’s (National Organization for Rare Disorders) goals is to assure that there is a Rare Disease Advisory Council (RDAC) represented at every State. Currently there are about 12 RDAC’s Nationwide. One of the NW Rare Disease Coalition Programs would be a WA RDAC. NORD advices and...

NW Rare Disease Coalition

One of NORD’s (National Organization for Rare Disorders) goals is to assure that there is a Rare Disease Advisory Council (RDAC) represented at every State. Currently there are about 12 RDAC’s Nationwide. One of the NW Rare Disease Coalition Programs would be a WA RDAC. NORD advices and…

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We hope to have this up and running in June! First study- We created a survey that will teach us how to differentiate what symptoms are associated with these Syndromes and which are not. We believe this will help parents know what to look out for and...

PEER Registry

We hope to have this up and running in June!

First study– We created a survey that will teach us how to differentiate what symptoms are associated with these Syndromes and which are not. We believe this will help parents know what to look out for and…

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WHAT WE ARE DOING

  • Mission Statement

    Our mission is to accelerate innovation and research to improve the quality of life for patients with FGFR Syndromes, including Pfeiffer Syndrome.

  • FGFR Syndromes

    What does FGFR stand for? What are the FGFR Syndromes? FGFR Craniosynostosis Syndromes Overview

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Collaboration

 

Improving Quality of Life

 

Finding Connections

 

Researching FGFR Syndromes

 

Upcoming and Recent Events

UPCOMING AND RECENT EVENTS

BORN A HERO, Member Organizations and Partners






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