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1. What is Project 528?
Project 528 is a global research initiative led by the Young Survival Coalition (YSC) focused on understanding the experiences of young adults diagnosed with breast cancer age 40 and under.
The project collects real-world experiences from patients across different countries and healthcare systems to better understand the medical, emotional, social, fertility, survivorship, and financial challenges faced by young adults affected by breast cancer.
The goal is to ensure that the voices and realities of young patients help improve future care, support, advocacy, and healthcare policies.
2. Why is this an important project?
For too long, young adults affected by breast cancer have been overlooked. They are often too young to fit standard screening guidelines, absent from research, and frequently navigating healthcare systems designed for people much older.
Project 528 aims to change that. As the largest global needs assessment of its kind, it gives voice to a community that has long been underrepresented. The data captures the real experiences of young adults across vastly different healthcare systems, cultures, and resources, revealing both the challenges unique to each region and the struggles that unite young breast cancer survivors worldwide.
This matters because data drives change. By documenting these realities, Project 528 ensures young adults are visible in research, represented in healthcare decisions, and prioritized in the advocacy and support programs being built for the future. These findings give researchers, policymakers, healthcare providers, and advocates the evidence they need to improve care, not just in one country, but globally.
3. Who is leading Project 528?
The project is led by Young Survival Coalition (YSC), the leading organization in the United States dedicated exclusively to supporting young adults diagnosed with breast cancer age 40 and under. Since 1998, YSC has worked to:
4. Who helped create the Project 528 survey?
Project 528 was developed collaboratively with input from international patient advocates, healthcare professionals, researchers, psychologists, and data specialists from around the world.
The survey was also shaped by insights from the YSC Council of Advisors, including medical oncologists and breast cancer experts specializing in young adult breast cancer.
This collaborative approach helped ensure the survey reflects diverse healthcare systems, cultures, and patient experiences globally.
5. Why is it called “Project 528”?
Project 528 was named in 2019 when the project started for the estimated 528,018 young adults living with breast cancer (Globocan 2018). Since then the estimated number has increased to 831,418 and continues to increase (Globocan 2022).
6. I see this project has pharmaceutical company logos on it. What is their role?
Project 528 is made possible through the generous financial support of our pharmaceutical partners. Their funding powers the cost of the work from survey development to data analysis to the reports we’re sharing with the world.
While their support is essential, the project itself remains fully independent. Our partners have no control or influence over the project’s methodology, findings, or data. YSC owns the data and is solely committed to translating these findings into accessible reports that nonprofit organizations, clinicians, and advocates can use for local education, policy discussions, funding justification, and program design.
1. Who can participate in the survey?
The survey is for anyone diagnosed with breast cancer at age 40 and under, regardless of their current age, treatment status, stage or subtype.
In addition to the those diagnosed with breast cancer age 40 and under, it is also for those who are a caregiver or healthcare provider for this population.
2. Survey languages available:
Survey is Available in 13 languages
عربي (Arabic), 中文 (Chinese/Mandarin), English, Français (French), Deutsch (Gernman), Ελληνικά (Greek), Italiano (Italian), हिंदी (Hindi), Magyar (Hungarian), 日本語 (Japanese), Portugues (Portuguese), Español (Spanish), Türkçe (Turkish)
3. Does Project 528 include men?
Yes. Project 528 is inclusive of anyone diagnosed with breast cancer as a young adult. Young male breast cancer is extremely rare, and the survey is primarily focused on the much larger population of young women affected by breast cancer. However, the project uses inclusive language such as “young adults” to ensure all individuals diagnosed young are welcome to participate.
4. Does the survey include long-term survivors?
Yes. Project 528 includes anyone diagnosed with breast cancer at age 40 or younger, regardless of how long ago the diagnosis occurred. Long-term survivor experiences are extremely important because they help researchers and organizations better understand:
The survey also collects information about year of diagnosis, allowing researchers to analyze experiences across different treatment eras. If someone was diagnosed with breast cancer before the age of 41 years old, they are invited to participate.
5. Is the survey anonymous and confidential?
Yes. Participant information is treated confidentially, and responses are analyzed collectively to better understand trends and patient experiences. Questions were designed to remain internationally relevant and aligned with applicable privacy and data regulations.
6. How long does the survey take?
The survey for patients takes most participants complete the survey in approximately: 20–30 minutes
The survey for caregivers and health care providers is much shorter at 5-10 minutes.
7. What topics does the survey explore?
The survey focuses on:
It also gathers demographic and background information to better understand healthcare differences globally.
8. Why should someone complete the Project 528 survey?
Completing the survey is not just about answering questions — it is about transforming lived experiences into data that can improve care, support, education, and advocacy for future patients. Every response helps:
Every response contributes to meaningful change. The survey helps ensure future decisions are based on real patient experiences, not assumptions.
9. Why is collecting data so important?
Without data, meaningful change is difficult. People who are working to make change to help patients, need data to make that change.
Project 528 helps:
→ Identify problems
→ Understand patient realities
→ Generate evidence
→ Inform better decisions
→ Drive action
The goal is to transform lived experiences into measurable impact that improves the future of young adults diagnosed with breast cancer.
10. What will happen with the survey results?
The data is not simply collected. The information collected will be used to:
11. How can the survey improve medical care?
The findings help healthcare professionals better understand:
This can contribute to more empathetic, informed, and patient-centered care for young adults diagnosed with breast cancer.
12. How can the survey support advocacy and public policy?
The data collected through Project 528 can help:
For example, the findings may help support efforts to ensure young adults with symptoms are taken seriously and referred appropriately for diagnostic imaging. New protocols might be created.
13. How can support organizations use the findings?
Foundations, advocacy groups, and patient organizations can use the results to:
The findings help organizations move from assumptions to evidence-based support.
1. What impact has Project 528 made so far?
Since its launch, Project 528 has become the largest global initiative focused on understanding the experiences and unmet needs of young adults affected by breast cancer. The project has helped move conversations from assumptions to evidence by generating critical data where very little previously existed.
Between 2022-2024, Project 528 collected:
The survey also includes important representation from people living with metastatic breast cancer.
Project 528 has already helped:
One of Project 528’s greatest achievements has been moving conversations from perception to evidence.
2. Who are the Project 528 reports designed for?
The Project 528 reports are intended to support:
The reports are developed by a specialized research and analytics company selected by the YSC to ensure rigorous analysis and meaningful interpretation of the data.
Once completed, the reports are publicly shared to:
The goal is for the findings to be accessible and useful to everyone working to improve outcomes and quality of life for young patients worldwide.
3. How can the survey improve medical care and advocacy?
The findings help:
The data also helps organizations adapt services based on real patient needs rather than assumptions.
1. Why should physicians and organizations support the survey?
Healthcare professionals and organizations play a critical role in helping patient experiences become visible.
Supporting Project 528 helps:
2. How can physicians and organizations help?
Organizations and healthcare professionals can support Project 528 by:
Every shared response contributes to stronger data and better future care.
3. How is the survey distributed?
Project 528 is shared internationally through:
This collaborative distribution model helps ensure broader participation and stronger representation across regions.
4. Where can people learn more?
5. How do I contact someone to talk more about Project 528
Email [email protected] or contact YSC’s CEO, Jennifer Merschdorf, at [email protected].