IgAN Hope Patient Registry
Advancing Research. Empowering Patients. Finding a Cure.
The time is now to ensure the patient voice remains at the center of all research and drug development for IgA Nephropathy and IgA Vasculitis. We’re doubling down on our commitment—not just to collect data, but to transform it into action. The IgA Nephropathy Foundation is unwavering in our mission to drive innovation, advance science, and find a cure. Together, through the IgAN Hope Patient Registry, we can change the future of this disease.
The IgAN Hope Patient Registry launched in July 2025 at SPARK Chicago—and across the USA online—to unite patients and families in the fight against IgA Nephropathy. This registry is more than just data—it’s a movement to drive research, accelerate treatments, and improve patient outcomes.
Make an impact: Contribute to studies that could lead to new treatments.
Be heard: Your participation helps educate doctors, improving care and earlier diagnoses.
Stay informed: Get exclusive updates as we prepare for launch.
What is the IgAN Hope Patient Registry?
Mission Statement
The IgAN Hope Patient Registry is dedicated to uniting patients and families affected by IgA Nephropathy to drive research, accelerate treatments, and improve patient outcomes. By joining, you contribute to groundbreaking studies and help shape the future of IgAN care.
Your participation doesn’t just fuel research—it also helps educate doctors and specialists about the real experiences of living with IgAN, leading to better care, earlier diagnoses, and more informed treatment options for patients like you.
Be Heard: Your Data. Your Voice. Your Hope. Your experience matters. Your participation makes a difference. Join us today to advance research and find a cure for IgAN!
Why Join?
Advance Research
Your data helps researchers understand IgAN better.
Accelerate Treatment Development
Be part of studies that drive new treatments.
Empower Yourself & Others
Stay informed and connected with the IgAN community.
Shape The Future
Your participation directly impacts the search for a cure.
What to Expect
Easy Enrollment: Securely register and provide basic health details.
Ongoing Contributions: Share updates on your IgAN journey over time.
Privacy & Security: Your data is protected, de-indentified and used only for research purposes.
Meaningful Impact: Researchers will analyze trends, outcomes, and treatment effectiveness.
Research Findings
Key Insights from the Registry: How your participation fuels discovery.
Recent Studies & Breakthroughs: See what researchers are learning.
How Your Data Helps: Real-world examples of impact.
Stay tuned for the latest findings!
The IgAN Hope Patient Registry is a growing global community of individuals affected by IgA Nephropathy (IgAN) and IgA Vasculitis. Its goal is to build a robust patient network of people living with these rare and related conditions who are willing to share information about their health and lived experiences.
This collective data will help drive research aimed at improving patient outcomes, understanding the full journey of living with IgAN and IgA Vasculitis, and identifying critical gaps in care, treatment, and support. The Registry gathers key information related to diagnosis, symptoms, management strategies, and general demographics—always under strict privacy protocols (no personally identifiable information is shared).
By keeping this information centralized and secure, the IgAN Hope Patient Registry empowers researchers, clinicians, and advocacy partners to accelerate discovery while protecting the privacy and trust of every participant.
Individuals of all ages across the USA who have been diagnosed with IgA Nephropathy (IgAN) or IgA Vasculitis are encouraged to join the IgAN Hope Patient Registry. For participants under the age of 18, a parent or legal guardian must provide consent and assist in completing the enrollment process.
If you have not yet received an official diagnosis but have a family history of IgAN or IgA Vasculitis and suspect you may be affected, you are still welcome to join. We ask that you inform the Registry staff if and when a formal diagnosis is made.
In the near future we expect to expand globally, starting with Canada.
We collect information about your diagnosis, treatments, symptoms, lab values, quality of life, diet, mental health, and daily challenges living with IgAN. You can update your data to reflect changes over time—helping us better understand your journey.
Your information is safe. The registry follows strict privacy laws, and your data is encrypted and stored securely. Only authorized researchers can access de-identified data—your personal information is never shared without your consent.
Participation is completely voluntary, and you can withdraw at any time. Your voice matters, and every story helps push research forward.
The IgA Nephropathy Foundation keeps Registry participants informed through regular updates on research findings, clinical trial opportunities, and other important developments via newsletters, emails, and educational resources. You can also visit the IgAN Foundation’s website or reach out directly to learn more about ongoing research and how to stay engaged.
Your Data. Your Voice. Your Hope.
Additional Questions?
Please contact us at info@igan.org for more information about the IgAN Hope Patient Registry.
