Why Walking is the Best PI Fundraiser
Sunday October 2, 2016 was the IDF Walk For Primary Immunodeficiency (PI) in Boston, MA! As a partnership between the Immune Deficiency Foundation (IDF) and Shire Pharmaceuticals, this walk began at Boston…
Sunday October 2, 2016 was the IDF Walk For Primary Immunodeficiency (PI) in Boston, MA! As a partnership between the Immune Deficiency Foundation (IDF) and Shire Pharmaceuticals, this walk began at Boston…
Takeda Pharmaceuticals is looking for patients to enroll in their new trial, described as; "A Phase 2, Randomized, Controlled, Open-Label, Clinical Study of the Efficacy and Safety of Pevonedistat Plus Azacitidine…
Is hosting a fundraising event meant to help people who have bone marrow failure diseases, such as aplastic anemia, at the end of October brilliant or insensitive? During the last…
There is a new Phase 3 Clinical that is currently recruiting MDS patients, take a look at the info below if you're interested. For more info and resources about MDS…
Don't miss the last three MDS Patient & Family Forums in 2016! All three events are free, sponsored by The MDS Foundation. Topics to be covered include: Therapies and Patient…
“Healing is a matter of time, but it is sometimes also a matter of opportunity.” – Hippocrates, Greek physician known as “The Father of Modern Medicine” When you’ve been diagnosed…
When you have a rare disease such as Fabry disease, it’s easy to feel alone. As reported on the National Fabry Disease Foundation’s website, no one really knows how many…
Hey Patient Worthy Community! Did you you know that September is Rheumatic Disease Awareness Month (RDAM for short!)? Well, now you do! Don't feel bad if you didn't know. This…
Remember the Parkinson’s disease Ice Bucket Challenge mania that spread across the globe? Did you find yourself overflowing with ideas about equally awesome challenges or ways to raise awareness and…
Imagine having a student in class that looks... a bit like this on a regular basis. You may have a lot of thoughts about what might be going on. The…
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…
Saturday September 24 is FH (familial hypercholesterolemia) Awareness Day, and it couldn't come soon enough. That's because, according to new research published in Circulation (the journal of the American Heart Association),…
The National Lipid Association hosted its 2016 Scientific Sessions from May 19-22 of this year and included sessions on familial hypercholesterolemia (FH). Now, in recognition of FH Awareness Day (September…
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…
You know that saying people use when someone’s facing a flood of crises? “God doesn’t give you more than you can handle?” Depending on your point of view that may…
I applaud the American Association of Kidney Patients for their efforts to raise awareness about a condition called Fabry disease. A rather rare genetic disease, Fabry disease seems to affect…
Superman, where are you now? Look no further than Warren, Michigan. Not many people may know or have heard about dystonia. It is a neurological movement disorder that complicates mobility…
There's good news for people living with Hereditary Angioedema (HAE), the genetic disorder that results in sudden and severe swelling basically anywhere throughout the body. As those living with HAE know,…
If you've got Fabry Disease and you live in Canada, you've GOT to check this out. If you don't have Fabry Disease, allow me to clue you in: It's a…
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…
Wanna know one GOOD thing about having a chronic illness like hemophilia? It can help you get a scholarship that might just change your life! When you have a chronic…
Gene therapy is the hot new thing in medicine these days--especially with hemophilia. The good new is, “Yay! There are hot new things in medicine exciting researchers!” The bad news…
Calling all kind and generous people living near Ilminster in the UK! On August 28, Zellweger UK and the Epilepsy Society raised money AND watched a lovely lady get her…
Optic neuromyelitis, also known as Devic's disease, is a rare disorder that affects the eyes and spinal cord. It occurs in approximately one in five out of 100,000 people, and…