COMBINEDBrain News

International Conference on Clinical Research Networks for Rare Diseases

COMBINEDBrain — Thu, 11 Jun 2026 14:43:34 GMT

The IRDiRC is pleased to announce that the meeting report from the 2^nd International Conference on Clinical Research Networks for Rare Diseases is now available. This report has been jointly developed by ERDERA, Rare Diseases International, and IRDiRC.

Held on 9-10 December 2025 in Heidelberg, Germany, in a hybrid format, the conference brought together global experts and stakeholders under the theme “Mobilizing the Global Rare Disease Clinical Research Ecosystem”. Building on the success of the inaugural edition in 2022, the event convened researchers, clinicians, patient advocates, industry representatives, policymakers and funders to strengthen international collaboration in rare disease clinical research.

Report: https://www.rarediseasesinternational.org/wp-content/uploads/2026/06/CRN-Conference-Final-Report.pdf

Clinical Research Networks play a crucial role in accelerating progress rare diseases by connecting expert centers, harmonizing protocols, and enabling data sharing across borders. The insights captured in the report aim to support continued collaboration and provide actionable pathways to strengthen and sustain these networks globally.

We kindly invite you to support the dissemination of this report within your networks and communities.

IRDiRC Publication

COMBINEDBrain — Mon, 01 Jun 2026 14:16:40 GMT

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.

Changes to Roadshow Schedule

COMBINEDBrain — Wed, 27 May 2026 20:33:38 GMT

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.

Black Ties for Rare

COMBINEDBrain — Thu, 21 May 2026 20:15:03 GMT

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

Biorepository Roadshows Update

COMBINEDBrain — Wed, 06 May 2026 19:37:19 GMT

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.

Annual Summit Dates and Location

COMBINEDBrain — Fri, 27 Mar 2026 19:06:16 GMT

Mark your calendar!

The 2026 COMBINEDBrain Annual Summit will be held on November 2-3, 2026. We will be at the Hilton Garden Inn Nashville Vanderbilt, 1715 Broadway, Nashville, TN 38203. We'll hold our general meeting on November 2 and offer a Clinical Trial Readiness Day on November 3.

The event registration page will be coming soon ... watch this news page for more details.

HOPE TO SEE YOU THERE!