MAGUNKRÓL - Rare Diseases Labs

ABOUT US

MISSION

We aim to provide specialty diagnostics services that haven’t been available in your country so farand that are geared towards chronic conditions. Rare Diseases Labs is your one-stop-shop for such services since we don’t work with just one single lab – we offer a selection of tests from a number of leading American labs. All these labs are accredited and CLIA certified and have published their methodology in well-established medical journals.

Navigating through various tests offered by different labs can be daunting as one tries to do their own workup to find a diagnosis, let alone the difficulty in understanding which labs are credible and which are not. Our mission is to alleviate you from these challenges, and only provide the best in class lab services so that you can trust the results and won’t be misled to a diagnosis that is below bar and incorrect.

For all intents and purposes, labs that operate in the field of ’new’ illnesses that are just being researched do it to achieve a business profit however not all of them are created equal and may adhere to different ethical standards. We have worked hard to pre-select the right diagnostics companies and we aim to partner with you and guide you through the process until a solid diagnosis is found.

BENEFITS OF WORKING WITH US

Independent from a particular lab or medical services company – we don’t want to find you
imaginary illnesses that you don’t have.
Commitment to suggest only the necessary tests since we have no interest in selling you any therapy
or supplements.
Save you money by getting the right diagnosis sooner with less tests
Chronic disease are mostly uncharted territory in Medical Science and many diagnostic companies
operate in a grey area – but we only work with proven ones for your benefit.
Selection of tests geared towards medical conditions and not per a particular lab’s test catalogue.
Baselining and predictive modelling – see our methodology for more details

A PERSONAL STORY

As the founder of Rare Diseases Labs Hungary I was also struck with a misterious illness and the journey to get a proper diagnosis and therapy led to the creation of this medical business service to try and help others who are in a similar situation.
In December 2018 I started to develop weird symptoms and very intense pain just out of the blue. All these complaints appeared to be unrelated from a medical standpoint, yet I just felt they must have the same origin and root cause. However due to their diffuse nature I had a very difficult time illustrating my condition to specialists. They would only be interested in symptoms pertaining to their field of expertise and just completely dismissed the rest, though I was sure those were significant understanding what the real cause was. I visited literally all specialty areas to no avail – having never received any tangible and actionable diagnosis. Except for the idea that it’s all psychiatric and symptoms manifest themselves through somatization (how ironic they created a word for it!) but I just couldn’t subscribe to this theory.

Does this sound familiar? Are you in the same boat?

I always suspected an infectious origin since my decline was very abrupt compared to my previous state of health. However since my symptoms were really vague I just ran all possible serology tests with private labs but they didn’t really give me a clear-cut answer. I spent hours if not even months doing research reading on NCBI and PubMed to try and nail it down to a few more obvious infections.
At some point I was diagnosed with Chronic Lyme by a specialist, but it just didn’t make any sense to me and there is also a lot of controversy around this condition even within the medical community.
But it was good enough to give me a broad direction – vector borne diseases looked a lot more plausible.

So I focused a lot more on these infections and used not only local labs but all the best ones in Europe to try and get to the bottom if it. Some results came back positive, that could be interpreted either way: chronic persistance or past infection, but symptoms didn’t support any of those. The most probable infectious serologies always came back negative though, leaving me puzzled. So after
even more scientific research it became clear that certain infections are nearly impossible to exclude beyond doubt as negative results could be false negatives possibly due to the limitations a specific lab may have in their technology and getting a definitive positive is greatly difficult. Only a few specialty labs have done their homework in terms of investing in the right technology, doing the
scientific research and calibrating their tests properly. Eventually I found a credible lab with an accurate test calibrated for cronic infection that confirmed what I’ve suspected all along.

Having spoken to a few other fellow patients it became evident that there is a huge gap in the diagnostics market and a great demand for lab tests that are acurate and reliable even with chronic infections. So I entered into business with all the leading labs in this area, founded my small business – Rare Diseseas Labs Hungary was born for the benefit of all fellow patients who are struggling to find the right diagnosis! I realized having decades of experience in building data science and big data departments in the corporate world made me uniquely positioned to understand the value of information-aided diagnosis and enabled me to facilitate analitics driven medical science. This wealth of experience combined with provisioned lab services has become the foundation of my business model. As a
result, the customers of Rare Diseases Labs Hungary can reap all the benefits of this multidisciplinary approach.

METHODOLOGY

The core of our methodology is to apply data science and analytics on medical data to try and
support or exclude a particular diagnosis. One key element is the use of baselining: don’t just check if your bloodwork’s values are within the normal range, but also note any consistent deviation from your own „healthy” baseline values from the past. Another aspect is to look at a predictive data model that also incorporates Big Data where correlation between known illnesses and the so-called host response has already been established. Host response typically includes lab findings, deviation
from one’s own baseline and the set of symptoms.

The next important pillar is the application of translational medicine guidelines, namely the evaluation and incorporation of currently researched and published potential illnesses into the
consideration of a potential diagnosis.