Support is here
Whether you’re living with C3G or primary IC-MPGN or supporting someone who is, having the right resources can make a big difference. Explore tools to help you connect and find guidance.
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Please note: These resources are meant to be informational only and are not intended to replace medical advice. Always talk to your healthcare provider about any medical decisions.
Apellis Pharmaceuticals, Inc., is not affiliated with nor endorses any particular organization, is not responsible for the content of any sites or resources, and makes no guarantees about the accuracy of the information or the quality of support provided.
Advocacy resources
Explore the rare kidney disease community:
AAKP is dedicated to improving the lives and long-term outcomes of kidney patients through education, advocacy, patient engagement, and the fostering of patient communities.
The American Kidney Fund (AKF) works on behalf of the 1 in 7 Americans living with kidney disease, and the millions more at risk, to support people wherever they are in their fight against kidney disease—from prevention through transplant.
The Foundation aims to eliminate preventable kidney disease, improve the patient experience, and ensure equitable access to all aspects of quality kidney care, from diagnosis to transplantation.
NephCure’s mission is to empower people with rare, protein-spilling kidney disease to take charge of their health while leading the revolution in research, new treatments, and care.
The National Organization for Rare Disorders (NORD®) builds community and creates a lasting impact by improving the health and well-being of people with rare diseases by driving advances in care, research, and policy.
Mental well-being resources
Caring for your emotional well-being is just as important—explore tools and support to help you cope:
Greater Good Science Center is an offering from UC Berkeley that provides research-based methods to help cultivate life skills like resilience, self-compassion, connection, and optimism via quick, tangible strategies.
Very Well Mind is an online resource in support of mental health and balance. It includes a robust library of more than 4,000 pieces of content written by doctors, therapists, and social workers to help improve health and happiness.
RareConnect is a platform where rare disease patients, families and patient organizations can develop online communities and conversations across continents and languages. The organization partners with the world’s leading rare disease patient groups to offer global online communities allowing people to connect around issues which affect them while living with a rare disease.
Caregiving resources
Resources to help you keep your cup full while caring for your loved one with C3G or primary IC-MPGN:
Caregiver Action Network is a large national advocacy organization that provides practical support to help individuals navigate the physical and emotional considerations of caring for a loved one. Rare Caregivers is their online resource that focuses solely on individuals with rare diseases. Here you’ll find articles, videos and stories on topics like accepting help, managing roles, and communication. They also offer a phone-based Care Support Team to connect you to relevant resources.
The Family Caregiver Alliance provides resources and webinars focused on daily needs, including navigating emotional stress, employment considerations, and self-care.
The National Alliance for Caregiving (NAC) is a catalyst for change, transforming how the United States recognizes, supports, and values the more than 53 million family caregivers providing ongoing, complex care. Through nationally recognized caregiving research and advocacy, NAC drives policy, system, and culture change to elevate family caregivers as a national priority.
The Mighty’s Caregiver Corner is a community board that offers support, guidance, tips, and tricks for navigating life as a rare caregiver.
