News

We are pleased to share that a new IRDiRC publication, “Rare disease preparedness: the time is now” has been recently published in the Rare Disease and Orphan Drugs Journal. The paper calls for urgent, coordinated global action to transform how rare diseases are diagnosed, treated, and prioritized within the healthcare systems. The publication is open access.

Read the full publication: https://www.oaepublish.com/articles/rdodj.2025.39?utm_campaign=website&utm_medium=email&utm_source=sendgrid.com

We kindly ask you to help us with the dissemination of this publication and sharing it with your networks. 

Please note, the following roadshow has been canceled:

GLUT1 - July 14-15, 2026 - Asheville, NC

As a reminder, there is another opportunity to donate in North Carolina, a 2.5hr drive away in Concord, NC on June 25-26.

And, there are two additional roadshow locations:

CureVCP - July 23-24, 2026 - Atlanta, GA - TBD

Rory Belle Foundation - August 8, 2026 - Boston, MA - TBD

Please contact biorepository@combinedbrain.org with questions.

Hello Rare Disease Community!

The TBCK Foundation is excited to host “Black Ties for Rare”, a family-friendly gala to honor and celebrate those affected by rare diseases. We warmly invite you to join us on Sunday, July 19, from 5-10 PM at the Hyatt Regency Aurora, CO for an evening of connection, storytelling, and community.

Please share this with your community and help us meet our mission to bring together individuals, families, and organizations across the rare disease space to build bridges and raise awareness for the countless conditions that are often overlooked.

Together, we can make the "Black Ties for Rare" Gala a powerful celebration of resilience, advocacy, and hope.

Still have questions? Interested in partnering in this collaborative fundraiser? Send a message to Emily or Nikki (emily@tbckfoundation.org or shearer@tbckfoundation.org).

Emily Durham, PhD
TBCK Foundation
Research Engagement Director

If you haven't been to a COMBINEDBrain Roadshow yet, here's what you're missing!

             

    

There is still room for non-hosting PAGs to send donors for sample collections at some of our locations. Please contact biorepository@combinedbrain.org for more information.