Get help navigating clinical trials for Myositis

Our team communicates with myositis 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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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.

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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 Myositis

Myositis, also known as idiopathic inflammatory myopathies include polymyositis, dermatomyositis, and necrotizing myopathy. What these conditions have in common, is that they are caused by the autoimmune system sending out autoantibodies that attack the body’s own muscle cells as if they were bacteria or viruses. Though rare, myositis is an autoimmune neuromuscular disorder and a rheumatological disease, you will probably be under care of either a rheumatologist or neuromuscular specialist who will prescribe treatment with steroids or other immunological treatments. 

The symptoms for all types of myositis are unexplained and progressing muscle weakness in muscles close to the trunk of the body, such as muscles of the forearms, thighs, back, hips, neck and shoulders.

Covid-19 and Myositis: Recent Findings

Surveys have shown remote monitoring is preferred over in-person visits by up to 70% of people with myositis.

The toll of rare disease on mental health

Life with rare disease can put your mental health on shaky ground as you don’t know what to expect in the future.

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. 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 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.

  • 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.

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