RARE Science Inc.

RARE Science Inc. A 501(c)(3) nonprofit working directly with patient families & foundations to find more immediate the At RARE Science, Inc. Our 3 step approach:
1.)

RARE Science is a California-based 501(c)(3) non-profit research organization. Through a unique collaborative approach, we work directly with patient families and foundations to find more immediate therapeutic solutions for children with rare disease. There is a large unmet need to support patient families and provide resources that bridge the gap to navigating the health care system in rare disea

ses. The RARE Science Platform enables information and data sharing across stakeholders and organizations fostering collaboration, which builds efficiency and speed to finding a therapy. we have a RARE approach of empowering patient families and foundations with the tools/resources they need to drive forward finding a cure. In parallel we assist in building a collaborative strategy across all stakeholder communities by using a neutral common data portal called the RARE Hub. The tools available through the RARE Hub enable data sharing across the different stakeholders. In addition, at all times the end goal – a therapy – is the driving force for the implemented strategy focusing on safety, efficacy and the urgency of time. Unite the patient community and bring rare disease awareness.
2.) Unite research and clinical communities specializing in the disease area.
3.) Unite all stakeholders through activities that foster collaboration and further disease research. For more information visit our website at www.rarescience.org

WE make RARE Bears!
11/08/2025

WE make RARE Bears!

When the Poly-Fil is calling your name, there’s nothing holding you back! What will you make next?

United we make change! Don’t miss Epilepsy Awareness Day at Disneyland
11/08/2025

United we make change! Don’t miss Epilepsy Awareness Day at Disneyland

This is our largest EXPO yet! Thank you to all our sponsors and partners and amazing providers who donate their time to help families on their Epilepsy journey.

www.epilepsyawarenessday.org

There is still time to join us at the National Society of Genetic Counselors to reach our goal of 200 for Ronald McD...
11/08/2025

There is still time to join us at the National Society of Genetic Counselors to reach our goal of 200 for Ronald McDonald House and ! We are grateful for

Genetic Counselors are our heroes! Our annual RARE Bear event at the National Society of Genetic Counselors Annual conf...
11/08/2025

Genetic Counselors are our heroes! Our annual RARE Bear event at the National Society of Genetic Counselors Annual conference! 200 RARE Bears are being finished up in between sessions to be gifted this year to Ronald McDonald House Western Washington and Alaska and Parent Project Muscular Dystrophy! We are grateful for this yearly partnership and the critical work of genetic counselors in supporting the parents of the kiddos we serve!

Dont forget to pick up your RARE Bear!We hope to see you at Epilepsy Awareness Days at Disneyland November 10-11 at th...
11/08/2025

Dont forget to pick up your RARE Bear!
We hope to see you at Epilepsy Awareness Days at Disneyland November 10-11 at the Citizen Health Booth. They will be sharing information on the free tool for the community that helps you navigate your child’s medical records at ease, organize informed questions for your doctor, create IEPs and letters of medical necessity, and learn from the collective wisdom of the community. We just had the opportunity to preview some of AI Advocate’s new features that are coming out soon that also help you learn and share information with other moms and dads. If you cant join us at Epilepsy Awareness Day at Disneyland this year, you can find more information here and sign up for free ! https://www.citizen.health/rare-bear

Meet Nasha Fitter, power-mom and co-founder of Citizen Health. First, Nasha is a mom with a daughter with FOXG1 epilepsy...
11/08/2025

Meet Nasha Fitter, power-mom and co-founder of Citizen Health. First, Nasha is a mom with a daughter with FOXG1 epilepsy.
Like many rare disease parents, she struggled to find answers for her daughter’s care. That inspired the creation of Citizen Health’s AI Advocate — a simple, secure assistant that helps families navigate medical records, understand genetic reports, prepare for doctor visits and IEP’s, get letters of medical necessity and much more. We just previewed this app along with new features coming soon, and we believe this is the tool our community has been waiting for.

This is a free tool for your family, for more information and to to sign up and see if it helps your family. https://www.citizen.health/rare-bear

Cure MITO FoundationTenaya Therapeutics Epilepsy Awareness Day at Disneyland The Foundation for Prader-Willi Research The Ehlers-Danlos Society Syngap Research Fund - SRF

https://www.rarescience.org/rare-bear-program/a-message-to-the-rare-bear-army/ #Trying this again! Please click on the l...
07/28/2025

https://www.rarescience.org/rare-bear-program/a-message-to-the-rare-bear-army/ #

Trying this again! Please click on the link above to see our message on the new process to reach more kids in need world-wide!

A heartfelt thank you to the ~6000 RARE Bear Army Members representing over 20 countries who support kids around the world through the RARE Bear program. Over 12,000 RARE Bears have been gifted to children in 76 countries since our inception 10 years ago! We continue to grow in membership and know t...

Don't miss the New Big News on how we plan to scale our efforts to bring more comfort and joy to kids around the world!R...
07/28/2025

Don't miss the New Big News on how we plan to scale our efforts to bring more comfort and joy to kids around the world!

RARE Bear Army - here is the new process you have been waiting for!

BERNINA USA Simplicity Patterns Fresh Start Surgical Gifts International Quilt Festival Quilt Alliance The Quilt Show.com with Alex Anderson and Ricky Tims

A heartfelt thank you to the ~6000 RARE Bear Army Members representing over 20 countries who support kids around the world through the RARE Bear program. Over 12,000 RARE Bears have been gifted to children in 76 countries since our inception 10 years ago! We continue to grow in membership and know t...

Fresh Start Surgical Gifts is one the many non - profit organizations that the supports by providing which bring joy...
07/25/2025

Fresh Start Surgical Gifts is one the many non - profit organizations that the supports by providing which bring joy, comfort and hope. We are so proud to be part of a child's journey at Fresh Start!

05/03/2025

As we look back at 2024 we want to extend a gigantic THANK YOU to our incredible donors and dedicated volunteers!

Your unwavering support has allowed us to provide support, strength, and education to families navigating the challenges of airway malacia. 💙

We’re thrilled to share that this year alone, we sent out 119 care packages across the USA, Canada, United Kingdom, Australia, South Africa, Netherlands, and the Philippines!

🔊A huge shoutout to our amazing partners at RARE Science Inc. and Chibebe—together, we’ve reached even more families in need!

To the Stronger Than Stridor community, it’s an honor to walk alongside you in this journey.

We are committed to our mission here at CWL and are working diligently to bring you more resources, updated education, and exciting events that foster connection and create change within the airway community.

A special thank you to our selfless volunteers, our hardworking board of directors, and our generous donors.

Your efforts make all the difference!

So whats next?
’s 15th birthday!
Can we invite you to our birthday party?

World Airway Day, 7.10.25
Paint those nails light blue!

Strides For Stridor walk, fall 2025
Everyone will be able to get involved!

and more!!!!

Thank you for a wonderful year and here’s to 2025!

🌟

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Encinitas, CA
92024

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