Get help navigating clinical trials in rare disease

Our team communicates with clinical trial teams on your behalf to get you the help you need quickly

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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 Diego
Diagnosed with Propionic Acidemia

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200+

medical centers worldwide

50+

patient groups & organizations

Meet our team

We’re on a mission to help people with rare disease feel empowered

Our team of dedicated nurses are here to guide families to vital clinical trials, offering solace and support. Know Rare's global impact is a testament to its team who have been impacted by rare disease and are focused on turning their pain into purpose, touching countless lives with empathy and determination.

In need of care and support?

Andreya Fletcher, Nursing Assistant

Recently I had the privilege to be a clinical research assistant where I helped with various aspects of clinical trials such as collecting data, recruitment and specimen processing.  I’m also personally connected to rare disease as my mom is diagnosed with Glanzmann Thrombasthenia which is a rare blood clotting disorder. Through learning from my mother’s experiences and supporting her in her journey, I understand how scary it can be to live with a rare disease. My personal experience combined with my professional experience in clinical research has given me the skills and insight needed to help people affected by rare diseases find clinical trials that are a good match for them based on their lives and concerns.

About Rare Disease

Rare disease, also called an orphan disease, is a health condition that affects a small number of people. A disease is considered rare if it impacts fewer than 200,000 individuals. These conditions can be genetic, environmental, or a mix of factors. Due to their low prevalence, rare diseases often present challenges like limited treatment options and delayed diagnoses. Research and finding effective treatments for rare diseases can be more challenging due to the small number of affected individuals.

At Know Rare we believe we can be better together, and we’re here to help bring rare patients together with one another and with researchers. Working together we can uncover more insights and ultimately help researchers understand more about rare disease so they can discover new treatments for the future.

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What you need to know about participating in clinical trials

Clinical trial listings are often complicated. Here’s a quick guide to understanding clinical trials better.

FAQ’s

  • 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, allowing individuals 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 with you and assess your suitability for a clinical study. If there's no current match, we'll provide information on other available studies and keep you informed about 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.

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