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Rare Care Podcast

Browse Rare Disease Advisor’s engaging “Rare Care” podcast series, featuring interviews with leading researchers, stakeholders, and influencers within the rare disease community.

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Smartphone app

Using Smartphones to Track Disease Progression in Myasthenia Gravis

When the first smartphone was introduced a decade and a half ago, there was much excitement at its novelty and the new parameters of its function. Over the years, smartphones have become slowly integrated into daily life, with users depending on apps for entertainment, navigation, commerce, and telemedicine. In 2023, the smartphone era has truly…

At home pulmonary rehabilitation

The Role of Pulmonary Rehabilitation in Improving Clinical Outcomes

Pulmonary rehabilitation has been a core treatment for various pulmonary ailments such as cystic fibrosis, idiopathic pulmonary fibrosis (IPF), and chronic obstructive pulmonary disease (COPD) for decades.  Pulmonary rehabilitation is a simple, noninvasive way to address a decline in lung performance. It can be performed in a home-based setting, reducing the patient burden in healthcare…

MTC complications

Researchers Explore the Prognosis of Patients With Thyroid Cancer

The medical community and the population it serves should be under no illusion of the poor prognosis of a patient with metastatic cancer; it is, unfortunately, more likely to result in early death than not.  With this clear-eyed view of the limitations of medicine and the ruinous potential of an unwelcome diagnosis, we shall look…

Woman looking in mirror upset

Understanding the Impact of Generalized Pustular Psoriasis on Quality of Life

Dermatological diseases such as generalized pustular psoriasis (GPP) often result in considerable distress among patients due to their outward visibility. Such dermatological diseases burden the patient in two ways: the disease itself, which needs treating, and self-perception and self-esteem issues that can result in considerable psychiatric pathology.  There is a dichotomy in medicine when it…

HIV blood test

A Closer Look at the Relationship Between AAV and HIV

Medical literature has described the concurrent presence of antineutrophil cytoplasmic antibody (ANCA)-associated vasculitis (AAV) and human immunodeficiency virus (HIV) infection in a single patient, although these cases are exceedingly rare.  HIV care has undergone a revolution of sorts in recent decades, especially with the introduction of pre-exposure prophylaxis, which reduces the risk of HIV infection…

Woman napping on couch

Adjusting to AATD Infusions

I have had infusions in the past to treat alpha-1 antitrypsin deficiency (AATD), stopped them, and started again due to insurance issues. Now, I one hundred percent know that infusions are necessary for my health, but I have also noticed that I am having a harder time adjusting to them. Looking back, I see that…

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