According to a story from Rare Disease Report, the pharmaceutical company Alnylam Pharmaceuticals announced the results of Phase 3 trials for its experimental drug patisiran. The drug is in the…
Matt Millen played linebacker in the NFL for 12 seasons. He was a tough competitor and won 3 Super Bowl rings. For eight years, he was the General Manager of…
According to a story from news.vanderbilt.edu, Charlotte Haffner has been working hard to advocating on behalf of amyloidosis patients. She recently underwent a heart transplant and stem cell transplant in…
According to a story from femalefirst.co.uk, Jas Shaw of the electronic music project Simian Mobile Disco was recently diagnosed with AL amyloidosis. The group was planning a tour of the…
Major pharmaceutical company Pfizer recently announced the success of a new experimental product. The drug targets a disease called transthyretin cardiomyopathy, related to amyloidosis, a rare and dangerous disease that affects…
A story published on ESPN.com, and written by Jackie MacMullan, details NBA Hall of Fame inductee Nate "Tiny" Archibald's diagnosis of the rare disease amyloidosis. Amyloidosis occurs when a substance called amyloid builds…
According to an announcement from The Amyloidosis Research Consortium (ARC), the organization has launched version two of the My Amyloidosis Pathfinder (MAP) tool. The tool was developed as a way for…
Save the date for this Amyloidosis Webinar! Attend this virtual event to find out about cardiac amyloidosis, specifically wild type transthyretin cardiac amyloidosis (ATTRwt). Mathew S. Maurer, MD, the Arnold…
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…
TGIF Patient Worthians! This week, we have two opportunities where you can spread some love. You can help a young boy with microcephaly and/or contribute to amyloidosis research. We also…
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…
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 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…
© Copyright 2024 Patient Worthy
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
