There are many organizations dedicated to helping patients with IgA nephropathy. Here are five of the top organizations that IgA nephropathy patients can turn to for support and resources.
The IgAN Foundation is a non-profit organization that is dedicated to funding research into IgA nephropathy. The organization was founded by a group of patients, caregivers, and medical professionals who were frustrated by the lack of progress in finding a cure for the disease. Since its inception, the IgAN Foundation has funded research projects around the world, with the goal of finding a cure.
In addition to funding research, the IgAN Foundation provides resources to patients and their families. The organization hosts an annual patient symposium, which brings together patients, caregivers, and medical professionals to share information and offer support. The IgAN Foundation also maintains an online community, where patients and their families can connect with others who are dealing with the disease.
The National Kidney Foundation is a non-profit organization that is dedicated to preventing kidney disease, improving the lives of kidney patients, and finding a cure for kidney disease. The organization offers a wide range of resources and support services to patients with kidney disease, including IgA Nephropathy.
Their website offers a wealth of information about kidney disease, including IgA nephropathy. The website provides information about the disease, its symptoms, and treatment options. The National Kidney Foundation also offers a free helpline that patients can call to speak with a trained professional about their disease.
In addition to these resources, the National Kidney Foundation offers a variety of support services for kidney patients, including support groups, educational programs, and financial assistance programs.
NephCure is a non-profit organization that is dedicated to finding a cure for nephrotic syndrome, a group of diseases that includes IgA nephropathy. The organization funds research projects around the world, with the goal of finding a cure for nephrotic syndrome.
In addition to funding research, NephCure provides resources to patients and their families. The organization offers a patient registry, which allows patients to connect with each other and share information about their disease. NephCure also provides a free helpline that patients can call to speak with a trained professional about their disease.
The American Association of Kidney Patients (AAKP) is a non-profit organization that is dedicated to improving the lives of kidney patients. The organization offers a wide range of resources and support services to patients with kidney disease, including IgA nephropathy.
The AAKP's website provides information about kidney disease, including IgA nephropathy. The organization also offers a free magazine, Renalife, which provides information and support to kidney patients and their families. The AAKP also hosts an annual patient meeting, which brings together kidney patients, caregivers, and medical professionals to share information and offer support.
In addition to these resources, the AAKP offers a variety of support services for kidney patients, including support groups, educational programs, and financial assistance programs.
The American Kidney Fund (AKF) is a non-profit organization that is dedicated to helping people fight kidney disease and lead healthier lives. The organization offers a variety of resources and support services to patients with kidney disease, including IgA nephropathy.
The AKF's website provides information about kidney disease, including IgA nephropathy, and offers a variety of educational resources to help patients and their families manage their disease. The organization also offers financial assistance programs to help patients pay for treatment, transportation to and from medical appointments, and other expenses related to their disease.
In addition to these resources, the AKF offers a variety of support services for kidney patients, including support groups, peer mentoring programs, and a free helpline that patients can call to speak with a trained professional about their disease.
Overall, these four organizations are among the top resources available to patients with IgA nephropathy. Whether you're looking for information about the disease, seeking financial assistance, or looking for emotional support, these organizations can help you find the resources you need to manage your disease and lead a healthier life.
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List the names of all the doctors, hospitals, and other facilities your loved one visits regularly, along with those they have visited in the past. Try to go back as far as you can, striving for at least the last 5-10 years, but do your best. Even if you can’t remember them all, having a strong baseline can help you quickly identify gaps in records.
It is important to make sure that you are fully empowered to make decisions on behalf of your loved one with Alzheimer’s. Your relationship status with the patient may not be enough to legally give you access to your loved one's medical information. It is a good idea to talk to an expert about securing special legal status, such as Power of Attorney (POA), a legal document that allows an individual to name someone as their decision maker should they no longer be able to make decisions on their own.
It’s important to have all of your loved one’s medical records together in one spot. This makes it much easier for you and your loved one’s physicians to accurately map the patient’s medical journey and more easily share information between doctors. Fortunately, tools exist to make record management and access simple. A free resource like PicnicHealth helps you collect and organize all of this information. PicnicHealth’s intuitive timeline allows you to pinpoint data across the medical history, eliminating your need for keeping heavy binders filled with paper records or keeping track of multiple software portal logins.
The better you understand your loved one's medical history, the better you can advocate on their behalf. Access and understanding of this information will help you to ask informed questions with physicians. Through regular communication backed by the data in the medical records, you can help your loved one’s care team develop a more successful care plan.
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Learn MoreWhen you’re juggling appointment times and insurance claims, putting a robust support system together might not strike you as the most urgent task. Investing the time to cultivate relationships with people can turn to in times of need will pay dividends. The next time you need a last-minute ride or just someone to listen, you won’t be on your own.
There are many condition-specific support groups and support groups for caregivers generally in person or online. In addition to the encouragement and empathy they provide, support groups can be a helpful source of tips, resources, and recommendations for navigating caregiving.
The backbone of effective caregiving is organization. Keep medical information, appointment schedules, and medication lists in order. Use a planner or a digital service like PicnicHealth to stay on top of your responsibilities. This attention to detail can prevent future complications and reduce day-to-day stress.
We’ve seen incredible breakthroughs in treatment over the past couple of years, powered by patients and their caregivers participating in research. Stay in the loop about the latest in medical advancements and available resources that could benefit your loved one. Whether it’s a new therapy option or a community service that aids independence, being informed can make a world of difference in the quality of care you provide.
It may seem self-centered to focus on self-care—but when you feel good, you can be a better caregiver. Whether it’s exercise, a mindfulness practice, a soak in the bath, or just time to rest when you need it, carve out those moments in the day when you can unwind, reset, and stay healthy mentally and physically. Think of it as building up your reserves of kindness, patience, and understanding—which can only benefit your loved one. No one can pour from an empty cup.
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Learn More(from 13 patients with LC-FAOD)
38% Female
15 providers / patient
7.5 years of data / patient
(from 13 patients with LC-FAOD)
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