Alle Activiteit

More than half of the people with rare diseases and their caregivers, asked in a survey, were undecided or less than willing to be vaccinated for COVID-19 if a vaccine was approved under emergency use authorization instead of the routine process, the EveryLife Foundation for Rare Disease reports. These findings highlight the need for a greater understanding of the U.S. Food and Drug Administration’s (FDA’s) emergency use authorization (EUA) process, as all current U.S. vaccines against this virus came via this pathway. People with rare diseases are often at a higher risk of poorer outcomes w

Almost half of all Australians live with a chronic disease, which contribute to some 90% of deaths. Link naar het originele artikel

A multidisciplinary team of researchers from Duke-NUS Medical School and the Agency for Science, Technology and Research (A*STAR) in Singapore has discovered a new mitochondrial peptide called MOCCI that plays an important role in regulating inflammation of blood vessel and immunity. The study, published in the journal Nature Communications, revealed how one gene encoded two molecules that provide two-pronged protection following viral infection. Link naar het originele artikel

Severe cases of COVID-19 can involve extensive inflammation in the body, and clinicians have wondered if this state is similar to what are called cytokine storm syndromes, in which the immune system produces too many inflammatory signals that can sometimes lead to organ failure and death. A new study published in Arthritis & Rheumatology indicates that different markers in the blood clearly differentiate excessive inflammation in critical COVID-19 from cytokine storm syndromes. Link naar het originele artikel

I’ve often felt like I’m just along for the ride when it comes to sarcoidosis. I’d wake up wondering what it would let me do. But a change I made in late February has given me a new outlook. It happened by accident. Maybe you read my glorious account of tackling “heart attack snow” that month? Well, there’s a part two to the story that ain’t so pretty. Mother Nature broke me. It only took a few more snowfalls, after triumphantly digging out that day, for it to happen. If you wonder what broken looks like, it’s a pajama-clad woman sitting inside for six days straight hoping the snow melts.

Bedankt Dirk voor je uitleg en link 🙂

The last day of pulmonary rehab is upon me. Truth be told, it’s bittersweet. This will be my third time in the rehab program. A few years ago, my pulmonary nurse practitioner suggested it might be a good program for me. She explained the particulars of the program, and I was sold. I’ve always been an active person, and I enjoy swimming, walking, and biking, so pulmonary rehab would be a welcome challenge for me, especially given my pulmonary sarcoidosis. Pulmonary sarcoidosis has a way of slowly stealing one’s breath. As it does so, it also steals energy, a little at a time. Sometimes wh

Varying severity of COVID-19 symptoms in patients is reflected by levels of a chemical biomarker in their body which scientists say could be used to better manage treatments and other interventions, including vaccinations. Link naar het originele artikel

Biomedical engineers at Duke University have developed a self-assembling nanomaterial that can help limit damage caused by inflammatory diseases by activating key cells in the immune system. In mouse models of psoriasis, the nanofiber-based drug has been shown to mitigate damaging inflammation as effectively as a gold-standard therapy. Link naar het originele artikel

The EveryLife Foundation for Rare Diseases is accepting applications for a scholarship program that aims to help adults with a rare disease pursue personal goals through training and education. For a second year, the #RAREis Scholarship Fund — supported by Horizon Therapeutics – will award 35 one-time scholarships, each worth $5,000, to cover a winning applicant’s undergraduate, graduate, or trade schooling costs. In the U.S., a rare disease is defined as one affecting fewer than 200,000 residents. Applicants do not need to be pursuing a degree to be eligible, but must be planning to take at

Wheezing, coughing that doesn't stop, a pale and sweaty face: clinically, severe asthma attacks look very similar from patient to patient. But biologically, not all severe asthma is the same—and a team of scientists has, for the first time, identified the key difference in people, a finding that has important implications for treatment. Link naar het originele artikel

New research led by the Garvan Institute of Medical Research has revealed how breast cancer cells that develop during or after pregnancy change their environment to form more aggressive tumors. Link naar het originele artikel

Skoltech researchers have developed a prototype of a fluorescence-based sensor for continuous detection of cortisol concentrations in real time, which can help monitor various health conditions. The paper was published in the journal Talanta. Link naar het originele artikel

Eyelids fluttering open to a new day, I mentally searched my body for signs that anything was different. But a sore arm with a Band-Aid was the only evidence of my vaccination 12 hours earlier. No headache, fever, chills, or any more fatigue than usual, which I was informed could be expected from the first dose of the Pfizer-BioNtech COVID-19 vaccine. I was relieved because when I first left the pharmacy, strange things were happening. My injection arm was numb and tingling, a sensation that later tap-danced across my face. I felt loopy, as if I had downed a beer too quickly, and an old fam

Testing how well "good" cholesterol particles reduce inflammation may help predict who is at heightened risk to develop cardiovascular disease caused by narrowed arteries, according to research published today in the American Heart Association's flagship journal Circulation. Link naar het originele artikel

aTyr Pharma, which is developing a candidate therapy for pulmonary sarcoidosis called ATYR1923, has appointed Andrea Wilson — a sarcoidosis patient and advocate who co-founded the Foundation for Sarcoidosis Research (FSR) — as a patient advisor. “We are pleased during Sarcoidosis Awareness Month to welcome Andrea, a leading advocate for sarcoidosis, as a patient advisor to aTyr,” said Sanjay S. Shukla, MD, aTyr’s president and CEO, said in a press release. “Andrea has dedicated the past 20 years to promoting awareness and generating support to accelerate research to find a cure for this debi

“I am not what happened to me, I am what I choose to become.” — Carl Jung I was browsing the internet last week looking for stock videos to help out a friend who was producing a video package for his work. We’ve been friends for many years, since working together at an advertising agency in the 1990s. Whenever he needs a video produced or help with a multimedia project, he often calls me. We have a great working rapport, so when we collaborate on a project, it’s like the old days of hashing out ideas over a few cold ones and shooting a few games of pool. I was looking for some royalty-free

As anyone affected by a rare disease knows, treating the illness while trying to go about everyday life is an expensive undertaking. But exactly how expensive — in terms of direct and indirect costs across rare disease populations — might still come as a surprise: almost $1 trillion in 2019 alone, according to an in-depth study released by the EveryLife Foundation for Rare Diseases. The study, covering 379 rare diseases affecting 15.5 million people in the U.S., put the total economic burden for that year at $966 billion — that’s over $600 billion more than the $327 billion estimated for di

From taking part in a virtual endurance challenge to joining in a virtual cooking class, to watching several speaker presentations, advocates are set to mark Sarcoidosis Awareness Month, observed each April. World Sarcoidosis Day will be celebrated on April 13. Awareness and education are crucial to increasing the recognition, diagnosis, understanding, and management of this rare disease, according to the Foundation for Sarcoidosis Research (FSR), which has several events planned. Sarcoidosis, with fewer than 200,000 cases diagnosed annually in the U.S., is a rare disease marked by an overac

Inflammation can be a visible part of how your body fights illness or injury. If you've ever sprained your ankle, you already know about it. Link naar het originele artikel

In the spring of 2019, Peruvian neurologists saw a significant increase in the number of patients with Guillain-Barre syndrome (GBS). This rare disorder occurs when a person's immune system damages the nerves, causing muscle weakness and sometimes paralysis. Although GBS typically only affects 3,000-6,000 people annually in the United States (or about 1 in 100,000), Peruvian doctors documented hundreds of cases between May and July 2019 and deemed it an outbreak. Link naar het originele artikel

A study conducted at the University of Campinas (UNICAMP) in the state of São Paulo, Brazil, shows that compounds produced by gut microbiota (bacteria and other microorganisms) during fermentation of insoluble fiber from dietary plant matter do not affect the ability of the novel coronavirus SARS-CoV-2 to enter and replicate in cells lining the intestines. However, while in vitro treatment of cells with these molecules did not significantly influence local tissue infection, it reduced the expression of a gene that plays a key role in viral cell entry and a cytokine receptor that favors inflamm

(HealthDay)—Rates of in-hospital cardiac procedures continued to increase in people with gout and rheumatoid arthritis (RA) from 1998 to 2014, although they decreased for the general population, according to a study published online Feb. 25 in Therapeutic Advances in Musculoskeletal Disease. Link naar het originele artikel

I stumbled upon sarcoidosis in 2002, and still wake each morning wondering what’s in store. It doesn’t follow a set path when it invades our bodies, making it just as baffling today as when I was first diagnosed. If I had named this disease, I would have called it “everything but the kitchen sink disease” because it can strike anywhere and cause every symptom imaginable. With only 150,000-200,000 people in the U.S. and 1.2 million people worldwide estimated to have sarcoidosis, it’s understandably difficult to diagnosis and treat. To change that, we must keep flooding healthcare provider

Prolonging a cellular defense response to inflammation could help regenerate the protective coating of axons that is degraded in diseases such as multiple sclerosis (MS), according to a Northwestern Medicine study published in eLife. Link naar het originele artikel