Project PACER: Building Shwachman-Diamond Syndrome Education Together

Eszter Hars, Ph.D., President and CEO, SDS Alliance
10 hours ago
5 min read

Welcome to our new blog series: SDS Spotlight, where we feature short videos to provide a monthly update on what we are working on, are excited about, and how YOU can get involved. This is the first official episode, after my introduction last month.

https://www.youtube.com/watch?v=WTVtCm-4J2s

We're Building a Comprehensive SDS Education Manual — And We Need Your Input

Shwachman-Diamond Syndrome (SDS) Alliance was founded with one clear mission: bridge the gap between patients and science to accelerate therapy development for SDS.

When families understand SDS research deeply, when they can participate meaningfully in studies, when they know how to ask the right questions and advocate effectively, progress moves faster.

That's why we're launching Project PACER (Patient-Centered Education and Research) — our PCORI-funded initiative to create:

A comprehensive SDS education manual
An online patient engagement course

But we can't build this alone. We need your voice.

This isn't just patient and community education. This is building the SDS community's capacity to partner with researchers and drive progress forward — together.

What We're Creating: An SDS Manual and Course (Co-Created With You)

1. Living with Shwachman-Diamond Syndrome: A Practical Guide

A comprehensive SDS manual covering every organ system affected by Shwachman-Diamond Syndrome. Each chapter includes:

Real patient and caregiver stories
Expert clinical overviews in plain language
Current SDS research updates — what scientists are working on, what studies are underway, how you can get involved

The SDS manual will be available in multiple formats:

Full PDF download
Individual chapter downloads
One-page quick guides
Infographics
Web content
Print edition

2. Patient-Centered Research Engagement Course

Built from the manual content, this online SDS course prepares you to:

Help researchers design better SDS studies — your lived experience shapes what scientists investigate
Participate meaningfully in patient-centered research — understand study design, endpoints, and what questions to ask
Advocate effectively with your healthcare team
Serve on patient advisory boards and research planning committees
Support and mentor other SDS families

When you complete the course:

You'll receive a certificate of completion
You'll receive compensation for your time (PCORI funding makes this possible)
You'll have the knowledge to be a true partner in SDS research

(Story contributions are volunteer; course completion, co-development work, and pilot testing are compensated.)

Why Shwachman-Diamond Syndrome Education Matters for Research Progress

The communities that move fastest toward new therapies are the ones where patients and researchers work together most effectively.

When SDS families deeply understand:

The science of SDS — ribosomes, bone marrow function, pancreatic insufficiency, genetic basis
The SDS research landscape — what's being studied, what's working, what gaps remain
How research studies work — design, endpoints, patient-centered outcomes
How to advocate for patient needs in research and clinical settings

SDS families become powerful partners in research. They ask better questions. They help scientists design studies that work in real life. They recruit other families to participate. They push progress forward.

Project PACER builds that capacity across the entire Shwachman-Diamond Syndrome community — and you're building it with us.

What Makes Project PACER Different: True Co-Creation

Most rare disease education materials are created for patients. Project PACER is being created with patients — to drive research partnership.

Four Ways to Participate:

Patient Co-Developers Help us design course content that actually prepares families for meaningful research engagement. Shape the curriculum, review materials, guide priorities. Compensated.
Story Contributors Share your experiences to illustrate manual chapters. Your story helps newly diagnosed families understand what to expect. Volunteer.
Pilot Testers Try the course first and give feedback before we launch. Help us refine the experience. Compensated.
Course Participants Take the course when it launches and become equipped to partner with researchers. Compensated for completion.
You choose how deeply you want to be involved. Every level of participation strengthens the community's ability to drive science forward.

Your experiences shape what we build. Your questions determine what we cover. Your priorities guide where we focus.

This is co-creation at its core.

Take the Project PACER Community Survey (5 Minutes)

We've created a short SDS community survey to understand:

What topics are most important to you
How you want to participate in Project PACER
What formats work best for your life
What would make completing the course valuable to you

👉 Take the 5-minute Project PACER survey here

Your answers directly shape what we build.

If 50 people say "understanding SDS research" is a top priority, we make that chapter extra comprehensive. If everyone wants self-paced online modules, we build that instead of live sessions.

This is your chance to make sure we're building the right thing — together.

Who Project PACER Serves

This Shwachman-Diamond Syndrome education program serves everyone touched by SDS:

SDS Patients — Learn to advocate for yourself and understand your condition deeply
Caregivers and Parents — Get the knowledge and confidence to navigate the healthcare system and partner with researchers
Newly Diagnosed Families — Find clarity in the overwhelm and understand the path forward
Healthcare Providers — Access patient-centered guidance, clinical updates, and SDS research news
Researchers — Understand what SDS patients need and how to engage the community effectively

The manual will become our master resource. We'll create derivatives from it — one-pagers for specific moments (first 24 hours after diagnosis, building your SDS care team), infographics, videos, and more.

Project PACER Timeline

March 2026: Community survey launches (that's now!) Complete by March 15th!
Spring–Summer 2026: Expert and family recruitment, chapter assignments, course design and co-development
Fall 2026: Drafting and patient review
2027: SDS manual publication and course v2 launch

The work starts today — with you filling out the survey.

Our Mission: Bridging SDS Patients and Science

Every piece of work we do at the SDS Alliance — from this manual to our SDS patient survey platform (SDS-GPS) to our research partnerships — is aimed at one goal: accelerating therapies for Shwachman-Diamond Syndrome patients.

Our next big bold goal: Clinical Trials by 2030.

Project PACER is how we ensure families can be true partners in that work: