Addressing the Knowledge Gap among Rare Disease Patients

By Kartik Ramkumar, Patient Success Manager at Leapcure

In some of my patient conversations, what stands out the most is the stress and frustration in their voice. They share their symptoms (often chronic or difficult) and express their frustration with misdiagnoses and the lack of available answers to why they are experiencing certain symptoms. Sometimes, they have a plan to see a specialist to get answers, and sometimes they do not even know where to begin. The knowledge gap between symptoms and solutions is vast for rare diseases, and many times hard to identify.

The gap exists for many reasons. Patients have expressed that they do not have a clear source of information to determine why they are experiencing symptoms. This is due to an abundance of information on different diseases available online. This overwhelming repository can often confuse patients than provide assistance. Patients are also struggling during the pandemic to visit specialists and primary care providers, who can answer their questions, confirm diagnoses, explain disease and treatment management and direct them toward the proper resources toward understanding their disease. 

As part of our work with clinical trial recruitment, Leapcure is committed to providing patients with resources such as patient advocacy groups and trusted educational sites that can provide the guidance that so many patients are seeking. In addition, our clinical trial materials provide opportunities for patients to learn more about their disease along with a potential treatment. Leapcure’s recruitment capabilities provide the opportunity for clinical research to learn about patient knowledge gaps and adequately address them through proper educational tools, resources and partnerships with patient advocacy groups.

Resources for Patients:

NORD: National Organization for Rare Disorders https://rarediseases.org/

AARDA American Autoimmune Related Disease Association https://www.aarda.org/

Endocrine Web https://www.endocrineweb.com/

EURODIS: https://www.eurordis.org/

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