top of page

Join the SDS Alliance

Collaborative Research Network to #CureSDS

graphic to inspire collaboration as part of the SDS Alliance Network to #CureSDS and Shwachman-Diamond Syndrome

Thank you for your interest in joining us to work toward therapies and cures for Shwachman-Diamond Syndrome, together. The key to this disease is within each patient and their caregivers (family & loved ones). By collaborating with all stakeholders within the community, we can unlock the unknowns and achieve our mission to improve all patients' lives. There are many ways to help. Please join all opportunities that are right for you.

​

SDS Patients & Families

​

  • Join our mailing list to receive our newsletter and timely updates. You can unsubscribe anytime.
     

  • Join SDS-GPS to share your experience and drive research! SDS-GPS is a survey platform that makes it easy to fill out surveys and share relevant information while protecting your privacy. It's IRB-approved and data protection compliant. And, you can see how your answers compare to others.
     

  • Join the SDS PFDD meeting on June 4th, 2025! It is the largest gathering of SDS patients and caregivers, and a unique opportunity to connect with each other, researchers, doctors, and the FDA. A once-in-a-lifetime opportunity.

A child smiling and looking forward to a brighter future, dressed up in a doctor's costume with large light blue glasses and a hat with a red medical symbol. Shwachman-Dimond Syndorme.

Physicians & Researchers

​

  • Join our mailing list to receive our newsletter and timely updates. You can unsubscribe anytime.
     

  • Apply to join our Medical and Scientific Advisory Board or Strategy and Method Expert Advisory Board. Email us at connect@sdsalliance.org

Community Supporters & Volunteers

​​

  • Want to follow and support the fight to #CureSDS? Join our mailing list to receive our newsletter and timely updates. You can unsubscribe anytime. Joining provides access to our newsletters, research progress, and updates on our fundraising opportunities and annual events.
     

  • Do you have a passion for improving the lives of SDS patients and their families? Do you have free time and/or a special skill or talent? Consider volunteering to move our work forward. The SDS Alliance Network is comprised of physicians, researchers, patients, loved ones, and life-science students. Our organization would not be successful without the hard work and dedication of so many people who volunteer their time to help us fight for therapies and cures. If you are passionate about SDS and want to help us advance our life-saving research by joining our team, email us at connect@sdsalliance.org.

bottom of page