Help researchers learn more about your life with Multifocal Motor Neuropathy (MMN)

No one knows more about MMN than people who live with it. Share your experiences with the leading researchers in MMN to help them develop potential new ways to treat it.

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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... Can’t thank them enough for giving us hope for the future!

Fran, Mom of Diego
Diagnosed with Acidemia

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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 disease.

Help researchers
learn more about MMN

Multifocal Motor Neuropathy (MMN) is a rare neurological disorder characterized by progressive muscle weakness and atrophy, primarily in the arms and hands, without sensory loss. It involves immune system attacks on peripheral nerves, leading to disrupted nerve signals.

Researchers are studying MMN and other rare diseases through Observational or Natural History Studies – clinical studies that observe people with rare diseases over time, to understand how it progresses, how and when symptoms flare, and how current medications are working for it. There are no changes made or study medication given, so you will continue to follow your current routine, medications, visits, and lifestyle. You will only be sharing your medical history and your experiences with a leading specialist in your disease.

This will help researchers better understand what it’s like to live with MMN, and to look for a way to improve it. The information collected during Observational and Natural History studies can then be used to develop a clinical study for a potential new medication, which you may be interested in participating in.

What to know about observational research studies

An observational study is designed for researchers to ‘observe’ the daily lives of a person with a rare disease.

When we are struggling, it is important to learn how to say: “I need help”. There’s no “right” way to ask for help, but here’s how to start:

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.

Interested in helping to advance research in MMN?

FAQs

  • Multifocal Motor Neuropathy (MMN) is a rare neurological disorder characterized by progressive muscle weakness and atrophy, primarily in the arms and hands, without sensory loss. It involves immune system attacks on peripheral nerves, leading to disrupted nerve signals.

  • Studies designed for the sole purpose of collecting information to gain a better understanding of disease(s) are called ‘observational studies’. Unlike a clinical study for a potential treatment, there is no study drug or medication given – this type of study is for information collection only, and people who choose to participate continue to follow their current routine, without any change directed by the study. The study is designed only to ‘observe’ and not ‘intervene’.

  • There are three main reasons why people choose to participate in an observational vs a treatment (or interventional) study.

    1. A chance to participate in research without having to risk any disruption or change to the way the condition is currently being managed.

    2. To come under the observation of the leading specialists in the rare disease on an ongoing basis, over an extended period of time.

    3. To help researchers better understand what it’s like to live with the disease, so they have greater insight to develop new treatments for it.

  • Participating in an observational study is voluntary, allowing individuals control over their decision to join. Particpants are able to withdraw from the study 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 by ensuring your questions are answered and expectations are clear.

  • Our patient support team will call you to learn more about you, including your medical and health history, your location, your current situation, to determine if there is a research opportunity that matches your profile. These research opportunities could include a clinical trial/study or an observational study. We aim to provide information on available studies and keep you informed about opportunities for you to participate now and in the future.

  • Think of Know Rare as your personal navigators, or guidance counselors, to rare disease information and leading disease experts. With a team experienced in medical and clinical research, we can help you understand eligibility for health outcomes, and connect you with nearby research centers. Our understanding of the observational study process ensures you have a clearer idea of what to expect throughout your journey and we walk with you through each step so you don’t have to do it alone.

  • There is no charge to use our services. Our mission is to create awareness about ongoing research opportunities and make them more accessible for people living with rare diseases. Our company and 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 what we can do to simplify the screening and study participation process for patients who would like to take part in research.

  • We hope to provide you with information to support you as you navigate through the many complications of living with a rare disease. It’s difficult to find doctors who are knowledgeable about many of these diseases, and by participating in an observational study you will have access to a leading specialist in your disease. If you’re considering participating in one of these studies, our team will let you know what to expect and can help you find a study that fits your needs.

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Help leading researchers learn more about daily life with a rare disease

If you, or a loved one, are interested in learning more about participating in an observational study, we encourage you to contact us by filling out the brief form below: