Who is RareLook™ for?
For Patients, Parents, Caregivers, and the Public.
RareLook™ is a lifeline for affected individuals, families, and caregivers searching for answers about an undiagnosed condition in a loved one. It offers easy-to-understand information about undiagnosed medical conditions. To get started, simply visit the RareLook™ page and complete the sign-up form. RareLook™ is completely free to use.
The benefits of RareLook™.
Patient empowerment.
RareLook™ empowers patients, parents, and caregivers to actively collaborate with their treating physicians in reaching a diagnosis more efficiently, by using the same rare disease platform.
Free access.
Patients, parents, and caregivers are invited to sign up for RareLook™, free of charge, and begin selecting signs and symptoms. RareLook covers 4,023 rare diseases and serves as the layman’s version of RareMDx™. To enhance accessibility, approximately 3,895 of the 7,360 medical terms for signs and symptoms used in RareMDx have been translated into everyday language within RareLook.
Informed partnership.
Search results from RareLook™ can be shared with patient's treating physician through a 'Letter to Treating Physician', that is automatically generated within RareLook. This letter includes all selected symptoms, along with a list of suspected rare diseases for the physician’s review and consideration.
Free access for your physician.
To obtain the 'Letter to Treating Physician', click the icon labeled 'Letter to Treating Physician' above the list of predicted diseases. Share this letter with your physician, who can use the included code to redeem free access to RareMDx™ for six months, allowing them to complement your search results with additional insights from your medical records.
RareLook™ offers a focused, curated database specifically tailored to rare diseases, ensuring users receive accurate and relevant information. In contrast, general symptom checkers, often referred to as "Dr. Google", provide broad, non-specific content that may be inaccurate or insufficient for identifying rare conditions.
4023
Rare Diseases in RareMDx & RareLook
7360
Medical ontology (HPO) in RareMDx
3895
Plain-language symptoms in RareLook
45
Rare Disease Centres of Excellence
For each predicted rare disease, RareLook provides the following information.
- Rare disease name, and synonyms.
- Rare disease description.
- Unselected but typical signs and symptoms associated with the predicted disease.
- Directed web access to 45 Rare Disease Centers of Excellence, each staffed by multidisciplinary teams of clinical experts in rare diseases.
- Directed web access to 2,061 rare disease–specific and advocacy organizations across more than 100 countries.
How to use RareLook™
Create an account.
RareLook is available in most countries worldwide and is currently compatible with laptop and desktop computers only. For the best experience, we recommend using Google Chrome as your browser.
Initial search for signs & symptoms.
Once logged in, you will have full access to RareLook™.
You can begin by entering symptoms, or keywords. Please select only those that accurately describes best the observed condition. If you’re unsure about a term, it’s best not to select it, take your time to search for more precise keywords or contact treating physician.
To proceed, select at least four symptoms, then click the ‘Search Diseases’ button. This will activate RareLook’s probability algorithm and generate a list of up to ten suspected rare diseases ranked by likelihood.
Secondary search to refine your search results.
To refine your initial search, hover over the name of a predicted disease. This will reveal two labels: ‘More Symptoms’ and ‘Disease Info’.
Clicking on ‘More Symptoms’ will open a pop-up displaying additional signs and symptoms typically associated with that disease that were not previously selected. You can select any that apply directly from this list. Once you’ve made your secondary selections, click ‘Search Diseases’ again to update the results.
You may repeat this process for each predicted disease. The more accurate signs and symptoms you select, the higher the validity of the suspected diagnosis.
Disease information for each predicted rare disease.
When you hover over the name of a predicted disease and click on ‘Disease Info,’ RareLook™ provides a comprehensive overview, including:
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Disease name and synonym(s).
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A clear disease description and synopsis.
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Additional signs and symptoms commonly associated with the disease but not previously selected.
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Directed web access to 45 accredited Rare Disease Centers of Excellence.
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Web access to 2,061 rare disease advocacy organizations across more than 100 countries.
Many of these organizations have Medical and Scientific Advisory Boards, often composed of clinical experts. This creates an opportunity for your treating physician to consult with local, regional, or national clinical experts familiar with the suspected condition.
Subscribe to RareLook™ for free and begin your journey toward understanding an undiagnosed medical condition.
Patients, parents, and caregivers have free access to RareLook™. If your initial use of RareLook™, followed by your treating physician’s use of RareMDx™, results in a confirmed diagnosis, we would greatly appreciate it if you would consider sharing this news with us.
Team up with your treating physician.
Why the "Letter To Treating Physician"?