Potentially good news arrived for patients with hereditary TTR amyloidosis, as the treatment drug inotersen received it's New Drug Application approval and will go into review by the U.S. Food…
Have you ever really considered everything your kidneys do? Can’t recall that Biology 101 class, huh? When you have a rare disease like amyloidosis, the danger of developing chronic kidney…
Exciting updates have come out of Alnylam Pharmaceuticals. They just released data from one of their highly anticipated trials for its leading rare disease drug. It looks like it did…
My grandma drank three cups of green tea every day. It didn’t matter if it was 98 degrees outside in the middle of August or the coldest day in December…
How often do you reflect upon all the genuine reasons to be grateful? What prompts you to shift your focus from the sense of self to others? Do you find…
PW Partner the Amyloidosis Foundation (AF) is hosting their annual amyloidosis research benefit and you won't want to miss it! The AF was founded by two amazing amyloidosis patients who strived…
"The Troubles" in Ireland/Northern Ireland go back to the 1700s, and they were aptly named. There's been a lot of fighting on both sides—those sides being the Irish and the English.…
If you think this summer is hot, last summer was on fire for amyloidosis advancements and support. Our partner, The Amyloidosis Foundation produces a seasonal newsletter for all those interested…
1. On Thursday, June 1st at 12 pm EST, 11 am central, there will be a seminar by the Amyloidosis Foundation to better understand this complex disease. It will be narrated by two physicians from…
An amyloid is an abnormal protein produced by a person's bone marrow. It builds up in the body's organs and, while rare, is very serious. The disease is called amyloidosis,…
When Louis Mendiola was a young man, he served our country as a soldier in Vietnam. Years later, Mendiola, now 62 years old, had another fight on his hands: He…
People who take initiative figure out how to do things on their own. And that’s exactly the case for Reva Dolobowsky and her current volunteer role as the warm welcoming…
While discussing stem cells can immediately polarize a conversation, the promise they offer could silence the critics. The ability of stem cells to become other types of cells is well…
Have you lost a friend or family member? Do you wonder how you can memorialize or honor their life? This is the dilemma of Kate Shooshan, whose father died of familial…
Doggone, it feels good to fight amyloidosis! The condition causes abnormal proteins to be deposited in organs like the kidneys and heart. That's got bad news written all over it. But…
Hey, do you like helping people--especially people who have amyloidosis? Also, do you live in or near New Jersey? Or will you be in the area later in September? If…
On Saturday, 29 October, 2016, the Adam Gardiner Fund will host Come Racing at Rosehill Gardens in Randwick, Australia. The event, like everything the AGF does, is intended to raise funds to…
On November 12, 2016, Present Troubles Racing will host their Hills and Hollers Half Marathon & 5K, which is intended to raise awareness about amyloidosis and funds to help support those affected…
Welcome to this week's Editor's Choice! We hope that those of you who are having a back-to-school week, are smooth sailing! This week, we have some news on IPF and hemophilia…
Finding the money to fund research and the development of treatment (and maybe even a cure) for most rare diseases is difficult for a couple reasons. Rare diseases are notoriously hard…
In a nutshell... Amyloidosis is a rare blood disorder that occurs when a person's bone marrow makes too much of a protein called "amyloid," which then collects in the body's…
It's no secret that Scrubs helped me get through Lyme treatment, as it is surprisingly profound. In Season 5, Episode 6 there is a very pleasant older woman who has…
If this makes sense to you, “Hey, look! Some dude on a sponge has wiped out and is going over the falls on a hollow little right!” then you need…
Autumn is going to be a fun time for people interested in supporting essential research for amyloidosis. Amyloidosis is a group of about 15 rare, progressive, and incurable diseases of…
Happy American Independence Day Weekend Patient Worthy! What happens when you look into the mirror and the person staring back isn't who you were expecting? One word: acromegaly. Do you or…
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