Overview (Coming Soon)

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 what questions to ask their doctors. The study will also include standard data that will be useful for researchers and scientists.

With this registry we hope to find ways to collaborate with researchers, pharma and biotech companies. Accentually create a system that fund itself and more research projects.

With the FGFR Syndromes- Collaborative Research Network we will prioritize 2 research projects at a time, fundraise, find the right scientists to do the work, and keep the research we want moving forward.

More information…Coming soon.…

Overview(Coming Soon)

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 supports these initiatives, they don’t lead any of the RDAC’s. RDAC’s are associated with an act of legislation (a Bill). The purpose of an RDAC is to report and educate legislators.

Born a Hero has been working on establishing the WA RDAC since 2019. We have been working on interacting with other RDAC leaders to understand what they have done, and what has and hasn’t worked for them. We have read several RDAC reports and have, have been working on establishing ties with several legislators, and are proud to have identified legislative champions for our efforts with the WA RDAC. It has been exciting to build the team for this coalition. We have worked hard to gather a diverse representation of stakeholders involved in rare disease research. It includes world famous gene therapy experts and recognized scientists from University of Washington, and Seattle Children’s Hospital. Recently we have built a strong connection with the WA Department of Health and their Newborn Screening Team and Life Science Washington.…

Overview

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 Website

2021, Agenda

2021, Bios

Breakup Overview-2021 Seattle Rare Disease Fair

Day 1 consists of- 1. The NW Rare Disease Coalition Roundtable Discussion, it includes different stakeholders, world famous gene therapy experts, scientists, and leaders in the rare disease space. 2. The Rare Disease Policy Roundtable with elected officials. 3. We will feature insightful scientific talks on orthopedic rare diseases.

Day 2 of The Summit- At the Summit, patients, families and advocates will get to know their local rare disease community, they will learn about what resources are available, and understand how they can be involved. During the entirety of the Summit we will be engaging the community in actionable items. It will be an wonderful opportunity to hear patient stories.…

Overview

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 in our community to feel proud of their traditions, cultures, abilities and physical appearances. The lessons are on anti-bullying, how to be kind to others, and about self-love. Each lesson includes; a book, an activity, a song, and a discussion. We believe that these topics and conversations need to be addressed at a young age.

Learn More…

Currently

We have introduced this program to- Lake Washington School District, Bellevue School District, and private schools. It has been very well received. Currently we are working with the Northshore School District Board and their Racial and Educational Justice group with the hope that this curriculum will be mandatory in the Northshore School District.…

Overview

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

Pharmaceutical and Biotech companies, Researchers, Academic Institution leaders, and rare disease advocates. We had over 130 attendees. It was a huge success. Following the conference, we host monthly meetings with Born a Hero’s medical advisory board and other specialists. We have a strategic research plan and are currently working on prioritizing two research projects in moving forward.

2020 Agenda- FGFR Syndromes, Collaborative Research Network Virtual Conference…