Symposium 2025 Countdown
An Unforgettable Symposium Experience Awaits
As we move into the final weeks before the first Superficial Siderosis Symposium, excitement is building across the SSRA community and beyond. What began as a bold idea is now set to become a landmark event in the rare disease world. With over 200 in-person and remote attendees already registered, we are thrilled to witness the incredible response from patients, caregivers, medical professionals, researchers, and advocates who share our mission to change the future of Superficial Siderosis.
Whether you’re attending in person or joining us virtually, June 11–13, 2025, promises to be a transformative experience.
A Night to Remember: Reception & Live Announcements
Guests will enjoy a thoughtfully curated meal, beverages, and dessert as we reconnect, share stories, and celebrate the progress our community has made. The reception will also feature the premiere of a short video presentation produced by Z2 Marketing—a powerful introduction to our mission.
We’re especially proud to share that Deb Zindler, a principal at Z2 Marketing, has been a dedicated SSRA board member for six years and helped bring this feature to life. Her passion and experience have played a central role in helping us share the Superficial Siderosis Research Alliance and our community in a deeply personal and widely impactful way.
But the highlight of the evening? Our live program and announcements begin promptly at 7:00 PM ET. Remote attendees can tune in via a livestream, ensuring no one misses the unveiling of new initiatives and key updates that shape the future of the SSRA mission and vision.
Our Speaker Lineup Is Complete
We’re proud to unveil a fully confirmed speaker schedule, packed with world-renowned experts, researchers, clinicians, and patient advocates. These individuals will guide us through the latest advancements, clinical insights, and lived experiences across two themed days: Clinical Care Day (June 12) and Research Day (June 13).
A Schedule Full of Impact
Thursday, June 12 – Patient & Clinical Care Day:
Sessions will focus on real-world care approaches, patient stories, accessibility in treatment, hearing and mobility supports, and the realities of living with SS. An open panel session will follow, with time for community questions.
Friday, June 13 – Research Day:
Our final day features a powerful lineup of SS researchers and scientists discussing therapeutic options, emerging data, and collaborative international research. The Research Roundtable will be an open dialogue between researchers and the SSRA, forging pathways for future studies.
Social Media Buzz: Engagement Is Soaring
If you’ve noticed an explosion of energy online, you’re not alone; our social media engagement has risen by 959% in the past month. Thank you to everyone who has shared posts, welcomed our speakers, or tagged a friend. Your support is building awareness and making a difference.
Every repost, comment, or message of encouragement is helping us amplify our reach to new families and patients still searching for information, connection, and hope.
Make sure you’re following us:
- Facebook:
- Superficial Siderosis Research Alliance (Global)
- SSRA Down Under (Australia, New Zealand, and the area)
- Superficial Siderosis Research Alliance Canada
- Instagram:
- X:
Don’t Miss Out Register Now
If you haven’t registered yet for your remote viewing link, it’s not too late. Registration is open and completely free.
Request your link here: https://ssra.livingwithss.com/symposium-reservations
A Defining Moment for the SS Community
This symposium marks a historic step forward for the SSRA and every individual impacted by Superficial Siderosis. For years, our community has worked tirelessly to raise awareness, connect isolated patients, and advocate for increased research. This June, we bring it all together.
On behalf of our entire team, we can’t wait to welcome you, online or in person, to what promises to be an unforgettable three-day event.
Let the countdown begin.
We invite you to take a look at the Superficial Siderosis Symposium Schedule at a Glance
The 2025 Superficial Siderosis Symposium was organized and underwritten by the Superficial Siderosis Research Alliance, with the support of our donors. Massachusetts General Hospital- The Neuroimmunology Clinic and Research Laboratory, or any responsible parties, is not affiliated with Harvard University, nor is Massachusetts General Hospital- The Neuroimmunology Clinic and Research Laboratory a Harvard University program or activity
