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GRANT OPPORTUNITY!

Apply to Our 2026 Grant Cycle by August 10th RTW Foundation's 2026 grant cycle is still open! If your organization is committed to advancing health equity in New York City for communities of color, low-income neighborhoods, recent immigrants, and other underserved populations, be sure to submit your LOI before the deadline. This year, our community health team is expanding services beyond funding to support communities and organizations particularly impacted by changes in safe, affordable access to care. We look forward to providing grant funding, co-hosting health fairs, and expanding health education with local health organizations.  LOI Deadline: Monday, August 10th Learn more and submit an LOI here Please feel free to share this opportunity with local health equity organizations in New York City. If you have any questions or want to connect, please reach out to our Director of Community Engagement, Sarah Garwood at sg@rtwf.org. LinkedIn Instagram Facebook YouTube Copyright © 2026 RTW Foundation, All rights reserved. You are receiving this email because you opted in via our website. Our mailing address is: RTW Foundation 40 10th Ave Fl 3 New York, NY 10014-1115 Add us to your address book Want to change how you receive these emails? You can update your preferences or unsubscribe from this list.

Please click this link to register for the Annual Summit to be held on November 2-3, 2026 in Nashville, TN! PAG members, clinicians, researchers, and industry partners are welcome. Like last year, we will take one registration per PAG and others can be added to the waiting list if there is space available.

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.

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.