Diagnosed with Sickle Cell Disease?

Our team can connect you with Sickle Cell Disease clinical trials to help you find potential treatment options currently being studied.

About Sickle Cell Disease

Sickle cell disease (SCD) is an inherited blood disorder caused by a gene mutation that causes the red blood cells to become sickle shaped. The sickle cells cluster together, clogging blood vessels and tiny capillaries, leading to various health problems.
The sickle-shaped blood cells have difficulty carrying oxygen and die earlier, causing anemia. This leads to lower energy levels, poor sleep quality, and fatigue, and can impact the ability to carry out daily activities.
The misshapen cells may also block blood vessels, resulting in unpredictable and painful episodes, often in the bones, chest, abdomen, and joints. The related damage to blood vessels can eventually damage vital organs, most notably, the spleen.

6 Tips to Help Fight Fatigue

How to spot and manage this common side effect of rare disease.

Five Things to Pack in Your Emotional Toolkit

Living with SCD is hard. Be ready to soothe minor emotional cuts and scrapes. These five tips can help you prepare a mental health first aid kit.

Perceptions of Pain: Research Shows It’s Personal

There are over 50 million people in the United States that live with chronic pain. However, researchers studying pain have learned something important: perception of pain is personal, and may have more to do with other factors than just the physical cause of the pain.

We are on a mission to empower the people of the rare disease community

Our team of dedicated nurses are here to guide families to vital clinical trials, offering guidance, solace, and support.

Know Rare's global impact is a testament to its team who have been impacted by rare diseases and are focused on turning their pain into purpose, touching countless lives with empathy and determination.

In need of care and support?

Meet Andreya

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.

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Fill out the form below and our team will help you explore clinical trials for Sickle Cell Disease

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Do the things that bring joy. Nothing is too small to bring a moment of contentment and joy. Life is about time and using that time to do the things you enjoy.

Howard Woolley

Sickle cell disease philanthropist and advocate

Sickle cell patients are not the same. You cannot treat us all the same.

Kay-Diene Robinson, MPH

Diagnosed as an infant, Sickle Cell Patient

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 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.