Finding that elusive diagnosis* with support of RareLook™️.

Thank you for your interest in using RareLook. Here is a brief overview about how to use RareLook and what to expect.

Click on Account at the far right in the menu bar of the home page. Create an account by following the instructions.

Once an account is created Log in and click on account.

The next page that appears is titled ‘Welcome to RareLook’. There is a darkblue box with white letters that states ‘Go to RareLook Tool’.

Click on it and a new page appears with a picture of a BlueWhale on the right and on the left a darkblue box with white letters that reads ‘Access RareLook ▶️’ and click on it.

Now the authenticating process starts to confirm its you. When confirmed is shows the page where it all happens.

At the top left corner under the Blue-whale logo there is box with a magnifying glass with the text ‘Search for signs/symptoms in RareLook’.

In that box you start typing names of signs/symptoms (S/S), one at the time and click ‘Select’ the appropriate S/S suggested. Select at least four (4).

For example when user types ‘Diarrhea’ it presents 13 different suggestions. When user adds a semi-colon ; as the last character of name i.e., ‘Diarrhea;’ only 7 suggestions show up.

The moment user selects the fourth S/S RareLook instantly activates its algorithms and presents a list with predicted diseases ranked in order of probability.

If user accidentally selected the wrong S/S and correction is needed, simply click on ‘Deselect’. Make sure that at all times a minimum of 4 S/S are selected.

The name of each predicted disease contains all its synonym(s) as reported in scientific publications.

Each paragraph with name of predicted disease includes a unique feature titled ‘More signs/symptoms’. This feature enables user to make a subsequent selection of S/S that are typical for this disease but were not selected previously.

Click on ‘More signs/symptoms’ and select as many as relevant. With each additional S/S selected RareLook algorithm recalculates the order of probability and related score. The score represents the consolidated ‘weight’ of all selected S/S relative to each disease ranging from 1-10.

Clicking on the name of a disease of interest opens a page with disease specific information and related resources.

Above the list with predicted disease there is a Dark Blue box with white text ‘Letter to Treating Physician’.

In this ‘Letter to treating physician’ you will find a summary of selected S/S as well as the predicted diseases. We recommend sharing this letter with treating physician to aid in your ongoing research efforts. We are pleased to offer treating physician complimentary access to RareMDx™️ for six (6) months. RareMDx is the medical version of RareLook. To redeem this offer, please have physician redeem the code provided in the letter. Instruction about how to use the code are on our website. By using RareMDx, treating physician will be able to complement the initial search results in RareLook with a broader selection of medical and scientific S/S, based on the patient’s medical records. We believe this tool will be a valuable addition to physician’s continued care of the affected individual.

At the bottom of the page user has directed web access to about 2000 different rare disease societies and advocacy organizations aound the globe.

To assist frontline physicians in referring patients to Rare Disease Centers of Excellence (CoE) for further evaluation, we have listed CoE along with their URLs and locations. Hover over and click on name of the CoE for directed web access.

If you would like to see registered rare disease organizations and accredited Centers of Excellence (CoE) included, please send an email to [email protected].

Thank you.

The RareMD team.