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It has been seven months since we launched the IgAN Hope Patient Registry, a powerful step forward in ensuring that every patient voice helps shape research, education, advocacy, and the future of IgA Nephropathy care.
Because of those who have already enrolled, we are beginning to see meaningful patterns emerge. In recognition of Kidney Month, we are sharing seven early insights from the registry so far.
1. Age of Diagnosis
Participants reflect a wide range of ages at diagnosis, reinforcing that IgAN impacts adolescents, young adults, and individuals later in life, often during pivotal life stages.
2. Stage of Disease Today
Registry participants represent all stages of IgAN, from early diagnosis to advanced disease. This highlights the importance of research and support across the full patient journey.
3. Symptom Diversity
Experiences vary widely, underscoring how differently IgAN can present from person to person.
4. Hypertension 44%
Nearly half of participants report being diagnosed with high blood pressure. This important connection reinforces the need for continued monitoring of both cardiovascular and kidney health.
5. Flank Pain 25%
One in four participants report experiencing flank pain, a reminder that physical symptoms can significantly affect quality of life.
6. Family History of Kidney Disease 18%
Almost one in five participants report a family history of kidney disease, supporting the need for continued genetic and hereditary research.
7. Your Voice is Power
Every data point represents a real person, a real story, and a real opportunity to accelerate understanding and innovation in IgAN.
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