Know Your Options
Trusted resources for patients, families, and advocates — from understanding rare kidney disease to finding support, taking action, and staying informed on emerging treatments.
A diagnosis can feel overwhelming. These organizations and resources have been vetted and, in many cases, personally engaged with by the Albright family through years of advocacy. You are not alone.
Understanding Kidney Disease
What Is Chronic Kidney Disease?
CDC
Overview of CKD — causes, risk factors, symptoms, and why early detection matters. Includes the statistic that 1 in 7 U.S. adults has CKD.
Kidney Disease Information & Health Tips
NIDDK / NIH
Comprehensive kidney disease education from the National Institute of Diabetes and Digestive and Kidney Diseases.
All About Kidneys
American Kidney Fund
Patient-friendly explanations of kidney disease types, stages, symptoms, and treatment options.
What Is FSGS?
NephCure Kidney International
Focal Segmental Glomerulosclerosis explained — including how APOL1 variants can cause this rare kidney disease.
APOL1 & Genetic Testing
APOL1 Kidney Disease
NephCure Kidney International
Explains the APOL1 gene, high-risk variants (G1/G2), what it means to carry two risk alleles, and the connection to FSGS and kidney failure in Black Americans.
APOL1 & Kidney Disease in Black Americans
American Kidney Fund
How APOL1 risk variants contribute to the disproportionate burden of kidney disease in Black Americans — and what you can do.
APOL1 Awareness Day
American Kidney Fund
Resources from the annual APOL1 Awareness Day — including webinar replays, fact sheets, and tools for patients and families.
APOL1-Mediated Kidney Disease — For Patients
apol1ckd.com
Patient-facing resource on APOL1 kidney disease — what the genotype means, who is at risk, and current treatment research.
Patient Support & Community
NephCure Kidney International
NephCure
The only organization dedicated to FSGS and APOL1 kidney disease. Offers patient support groups, educational events, and research funding.
American Kidney Fund
AKF
Patient assistance, health coaching, and educational resources for people living with kidney disease. Home of the Kidney Health Coach Program.
National Kidney Foundation
NKF
Patient support, peer mentoring, kidney walks, and resources for every stage of kidney disease — from early CKD to transplant.
National Organization for Rare Disorders
NORD
Support for patients and families living with rare diseases — including rare kidney conditions. Offers patient assistance, disease information, and community.
Advocacy & Policy
Kidney Health Initiative
KHI
A public-private partnership between the FDA and the kidney community to advance therapies for kidney disease — including the APOL1 Advisory Council Jaime serves on.
KDIGO — Kidney Disease: Improving Global Outcomes
KDIGO
International clinical practice guidelines for kidney disease management, including the 2024 APOL1 Controversies Conference recommendations.
NORD Rare Disease Forum
NORD
Annual patient advocacy forum where Jorden has spoken — bringing together patients, researchers, and policymakers around rare disease priorities.
International Society of Glomerular Disease
ISGD
The global society dedicated to glomerular diseases, including FSGS and APOL1 kidney disease. Home of the PARASOL initiative.
Clinical Trials & Research
Search Clinical Trials for Kidney Disease
ClinicalTrials.gov
Search for open clinical trials for FSGS, APOL1 kidney disease, and CKD — including trials currently enrolling patients.
Inaxaplin (VX-147) — APOL1-Targeted Therapy
Vertex Pharmaceuticals
The first therapy designed specifically for APOL1 kidney disease is in Phase 3 trials. Learn about the AMPLITUDE trial and how it works.
NephCure Research Programs
NephCure Kidney International
Current FSGS and APOL1 research initiatives funded by NephCure — and how to get involved as a patient research partner.
NIDDK Kidney Disease Research
NIH / NIDDK
NIH-funded research on kidney disease, including APOL1 genomics, rare glomerular diseases, and health disparities.
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