Today is Rare Disease Day. A disease or disorder is defined as rare in the US when it affects fewer than 200,000 Americans at any given time. A disease or disorder is defined as rare in Europe when it affects fewer than 1 in 2000. Spontaneous spinal CSF leak is...
Today is DAY 2 of Spinal CSF Leak Awareness Week. Our focus for today is: Symptoms of spinal cerbebrospinal fluid (CSF) leak. We will be covering other aspects of spinal CSF leak throughout the week. The most common symptom is a positional headache, worse when upright...
Today is DAY 1 of Spinal CSF Leak Awareness Week. Spinal cerebrospinal fluid (CSF) leak is an important cause of new onset headache that can be very disabling. Importantly, it is treatable and can be curable with the correct diagnosis and with access to the right...
Landmarks across North America will support Spinal CSF Leak Foundation’s Leak Week with Purple lighting! Buildings and iconic landmarks in cities such as New York City, Philadelphia, Buffalo, Chicago, Cleveland, Atlanta, Miami and Toronto will be lit Purple during the...
PA Senate Democratic Floor Leader Jay Costa from Pittsburgh spoke before the Pennsylvania Senate today in support of Rare Disease Day 2017 and specifically in support of Spinal CSF Leak and our Foundation. Watch him speak. Many thanks to Senator Costa for his advocacy...
CLICK HERE to JOIN our THUNDERCLAP to help us launch #leakweek (Spinal CSF Leak Awareness Week) with the release of our new video animation called Upright Headache. As many of you know, a headache that is worse when upright can actually be from a spinal cerebrospinal...
During #leakweek which is February 26 thru March 4, 2017, we hosted a series of 3 expert Question and Answer sessions LIVE on our Facebook page. We were grateful to these 3 experts who graciously agreed to participate. Replays are available HERE
The National Organization of Rare Disorders (NORD) has a widely referenced library of more than 1,200 reports on rare disorders that provide important information written at a level suitable for patients and their families. NORD has recently released a new Rare...
We are very appreciative of Senator John P. Blake and his staff in advancing Pennsylvania Senate Resolution Number 13 to proclaim the week of February 26 to March 4, 2017 as Spinal CSF Leak Awareness Week in the Commonwealth of PA. The resolution was adopted on...
We are busy planning our very first Spinal CSF Leak Awareness Week. Save the date! February 26 - March 4, 2017 We'll be using #leakweek #spinalCSFleak and other hashtags. CLICK HERE for more info.
We have updated our series of resource documents, which are available on corresponding pages, as well as on our Resources page. These are written at a level suitable for patients that wish to be well-informed, as well as for health care professionals. We encourage you...
We're thrilled to announce a new partnership that will bring our resources in front of The Mighty's wide-reaching readership. We will now have a home page on The Mighty and will soon appear on stories related to spinal CSF leak on the site. The Mighty is a...