Meghan Rourke saw the need for more open conversations about chronic illnesses, sparking her to write The Invisible Kingdom: Reimaging Chronic Illness. In an excerpt from her novel, she shares…
Jonathan Rayner works at the University of South Alabama as the Director of the Laboratory of Infectious Diseases. Jonathan has studied ticks since back in 2018. He and his colleagues…
According to a recent article, a 6(b) study of pharmacy benefit managers and anticompetitive business practices was approved by the Federal Trade Commission following pressure from the NCPA. The Study…
I've known some wonderful fathers throughout my life. My own father was a gem. My siblings agree. However, it was not until I became immersed in the rare disease world…
At the end of May, 2022, the Governor of Connecticut, Ned Lamont, established a permanent Rare Disease Advisory Council (RDAC) for the state by signing House Bill 5500 (HB 5500).…
In the United States, a rare disease or condition is one which affects fewer than 200,000 individuals. Alternately, a rare condition in the European Union (EU) is considered one which…
Personable. Loving. Impactful. Those are all words that Angie Kane would use to describe her son Colton, who passed away at 21 years old in October 2021. When Angie talks…
We have been told occasionally that certain phrases we use when speaking with a terminally ill patient may sound insensitive. We have also been told what we should not say…
Advocacy is an extremely important part of supporting and helping the rare disease community. A big part of this is rare disease advisory councils (RDACs), which are governmental groups comprised…
As we know, many treatments for rare diseases are quite expensive - and this price doesn't even factor in travel, lodging, appointments, and more. To help with this, the government…
Sydney Miller, born in the UK in March 2020, has an extremely rare disease. Newsweek recently carried a story about Sydney and her illness. This little girl captured the hearts…
It is very rare that one might say that a car accident saved their life – but Yolanda Carusciello, who lives in Brooklyn, can say just that. Of course, when…
Leukemia, in general terms, is a form of cancer that affects the bone marrow and blood cells. According an article in Medical News Today, leukemia is categorized in accordance…
If you've been paying attention to the news lately, you know there's a shortage of baby formula in the United States. Many, many mothers and children have been affected, leaving…
If you've been paying attention to the news lately, you've probably heard of a rare viral illness that has been spreading around the globe: monkeypox. While monkeypox is more common…
According to a recent article, various tick species carrying dangerous pathogens are spreading across the United States, making it more important to know how to keep yourself safe. Tick-Borne Diseases…
On May 25, 2022, the Rare Disease Legislative Advocates (RDLA) held a briefing for the Rare Disease Congressional Caucus. This virtual event provided an update on various legislative initiatives relevant…
Rare disease research can be difficult to conduct, with one of the major contributing factors being funding. Research is expensive, and I mean really expensive. That's why grant funding and other…
According to a recent article, a storytelling and research hub has been launched by the nonprofit Good Days to create a platform for those in the chronic and rare disease…
Patients are advised to look for and report symptoms of a mysterious liver disease that has recently caused the death of three Indonesian children. Newsmax’s most up-to-date reports state that…
The WHO’s Emergency Response System Has Been Activated. Just last month, a World Health Organization (WHO) representative assured VICE World News that the WHO is taking this global outbreak very…
According to a recent article, a man in Maine has died after being bit by a tick and contracting the rare Powassan virus from the bite. Powassan Virus Powassan virus…
Jörg Richter is no stranger to difficult bike rides. In fact, shares KRDO, Richter has ridden his bike across the United States - from coast to coast - seven times…
When David and Melissa Wickham found out that they were expecting, the pair was thrilled. They had already been together for years – it took seven to conceive their daughter,…
Imagine the feeling of working for years with the goal of saving children who have congenital athymia. Then thirty years later the FDA approves a regenerative medicine based on your…
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