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…
Long-term extension (LTE) data is now available for setmelanotide, which is a treatment for rare causes of obesity, such as Bardet-Biedl syndrome (BBS) and POMC or LEPR deficiency. Data on…
For the last two and a half years, the COVID-19 pandemic has dominated the headlines. It has been hard to look online – or do anything in person – without…
Pancreatic cancer is one of the deadliest forms of cancer. According to the American Cancer Society (ACS), only about 11% of patients are expected to survive more than five years…
Lately, the first thing that enters a person’s mind if they encounter an unusual pain is that they may have cancer. Yet that was the last thing Georgina Masson, an…
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…
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