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About IgA Nephropathy

IgA Nephropathy (also called Berger’s disease) is a condition that affects your kidneys. It happens when a protein called IgA builds up in the kidneys and causes inflammation. Over time, this can make it harder for your kidneys to filter waste from your blood the way they should.

Some people with IgA Nephropathy may feel fine and not notice any symptoms at first. Others might see blood in their urine, have swelling in their legs, or feel more tired than usual.

At Know Rare, we help people living with rare conditions like IgA Nephropathy find clinical trials, support, and resources that fit their needs.

IgAN Articles from Know Rare

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Frequently Asked Questions

  • A clinical trial is a research study designed to evaluate the safety and efficacy of new medical treatments, interventions, or therapies. These trials aim to advance medical knowledge, improve existing treatments, or develop new ones. Participants in clinical trials play a vital role in advancing medical science, and their involvement is based on informed consent and ethical guidelines.

  • Clinical trial participation provides access to cutting-edge treatments, potentially improving health outcomes, while contributing to medical advancements. Close monitoring, and personalized care from leading experts are other potential benefits.

  • Clinical research is voluntary. Individuals have control over their decision to participate and are able to withdraw at any time. However, participants should recognize the responsibilities involved and consider whether they can meet the requirements before joining a study. Study centers aim to provide confidence through thorough pre-screening and screening, ensuring questions are answered, and expectations are clear.

  •  Our patient support team will call you to review your health history or the health history of your loved one to assess suitability for a clinical study. If there aren’t any current matches, we'll keep you informed about potential opportunities for the future.

  • Think of Know Rare as your personal navigators to clinical trial information and leading disease experts. With a team experienced in medical and clinical research, we can help you understand eligibility for potential clinical trials and connect you with nearby research centers. Our understanding of the clinical trial process ensures you have a clearer idea of what to expect throughout your journey.

  • There is no charge to use our services. Our mission is to create awareness about ongoing clinical trial opportunities and make them more accessible for people living with rare diseases. Our company founders, and many within our company, have walked a path of uncertainty in the face of a rare disease diagnosis, and we genuinely care about others and strive to do what we can to simplify the clinical trial process.

  • One of the services Know Rare provides is to help you explore participation in clinical studies. We created this service to help make joining a study an easier, more productive experience. Know Rare has access to rare disease clinical studies listed on the FDA’s website clinicaltrials.gov. Based on your profile, which you can fill out with the help of our team, you can be directed to a clinical study that may be right for you. The team can help you make contact with the researchers at a study center of your choice. Your personal health information and contact information will not be forwarded to anyone else, including the study sites, without your specific permission.

    The goal of Know Rare is to help make it easier to connect people to clinical studies. Study sponsors help in this effort by providing the funding for our efforts and by helping us get in contact with researchers and the study sites. Though the sponsors provide funding to help us connect people to their clinical studies, please know the choice of which study you wish to participate in is up to you and your doctors.

After my son’s diagnosis, I had so many questions and didn’t know where to turn for answers. Know Rare provided incredible support by connecting us to the right specialists. Can’t thank them enough for giving us hope for the future!

Fran

Mom of Child with Rare Disease

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