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Ehlers-Danlos National Foundation
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Bauerfeind USA (http://www.bauerfeindusa.com/en/home.html) is offering a 20% discount off your order during March! Visit http://b2c.bauerfeindusa.com/ednf and use the discount code EDNF032015.
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"Bobby also had Ehlers-Danlos Syndrome, a disorder affecting the strength of his ligaments."
At 13, Bobby Leithauser is finally getting ready to go back to school after battling a mystery illness that turned out to be several...
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Oy. That's a misunderstanding (among the several others) that hadn't been presented to me yet.
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"Each of us has a melody that is meant to be heard loud and clear. Our purpose in life is to transcend all the aspects of ourselves and our surroundings that seek to block out or interfere with the pure and uninhibited singing of this music inside us. The degree to which we are truly successful as humans is the degree to which we have mastered the art of being one and the same with our own song, so that it's not even a separate melody we're singing, but rather we are the melody itself." (Andrew W.K.)
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"As it fights the [$1 billion] Kentucky case, Purdue must also prepare to defend itself on a new front against a pair of lawsuits, one filed jointly by Orange and Santa Clara Counties in California, the other by the city of Chicago. Four other makers of painkillers -- Johnson & Johnson, Endo Health Solutions Inc., Teva Pharmaceutical Industries Inc., and Actavis plc -- are also named as defendants in these cases. The allegations and demands for relief are far more sweeping than those in the Kentucky lawsuit or the 2007 federal settlement.

"The lawsuits, filed earlier this year with the help of Washington D.C. law firm Cohen Milstein Sellers & Toll, allege a two-decade-long campaign by the industry to persuade doctors to make painkillers commonplace by obscuring the drugs’ risks and misrepresenting their efficacy. …The suits seek to prohibit future misleading statements as well as to compel the companies to pay restitution and penalties related to the cost of combating the abuse of painkillers." 

http://www.bloomberg.com/news/articles/2014-10-20/purdue-says-kentucky-suit-over-oxycontin-could-be-painful
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EDNF representatives will be meeting with members of our US Congress this week, as part of the celebration leading up to Rare Disease Day (http://rarediseaseday.org/).
The main objective of Rare Disease Day 2015 is to raise awareness with policy makers and the public of rare diseases and of their impact on the lives of patients, and to reinforce their importance as a public health priority.
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EDS UK and the Ehlers-Danlos National Foundation, in alliance with the EDS consortium in Ghent and medical professionals internationally, are very proud to announce an EDS International Symposium in New York City during May 2016. The primary goal is to reclassify the diagnostic criteria for all the types of Ehlers-Danlos syndrome. The symposium is also purposed with producing guidelines for medical professionals to use once a diagnosis has been reached as a universal guide for management. 

We are excited to be working on a project that will change the lives of those with EDS. Updated diagnostic criteria, published in medical journals across the world, will increase and improve diagnosis, and the management guidelines will finally ensure that there is an internationally agreed-on treatment plan that doctors will be unable to ignore. Finally our community will have the foundations we need to ensure more research, funding and recognition.
EDS UK and the Ehlers-Danlos National Foundation, in alliance with the EDS consortium in Ghent and medical professionals internationally, are very proud to announce an EDS International Symposium in New York City during May 2016.
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EDNF announces a free live webinar, "Compression Supports for Pain Relief and Stability," Thursday, March 5, 2015, 7–9pm ET, presented by Erin Grigsby (Physical Therapist/Bauerfeind Product Specialist). 

To participate in the webinar, please reserve your free access code at http://bit.ly/EDNFCompress. This webinar is tailored for patients and family members interested in learning more about EDS, but all are welcome. View more information on our website at www.ednf.org/webinars.
Join us on Thursday, March 5, 2015 at 7pm ET as Erin Grigsby, Bauerfeind Product Specialist, explains how compression supports can greatly improve the lives of those with EDS. Required field. First Name. Last Name. Email Address. By clicking this button, you submit your information to the ...
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In their circles
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Have them in circles
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Today from 7–9pm ET, there is a free webinar, "Compression Supports for Pain Relief and Stability," presented by Erin Grigsby (Physical Therapist/Bauerfeind Product Specialist).

To participate in the webinar, please reserve your free access code at http://bit.ly/EDNFCompress. This webinar is tailored for patients and family members interested in learning more about EDS, but all are welcome. View more information on our website at www.ednf.org/webinars.
Join us on Thursday, March 5, 2015 at 7pm ET as Erin Grigsby, Bauerfeind Product Specialist, explains how compression supports can greatly improve the lives of those with EDS. Required field. First Name. Last Name. Email Address. By clicking this button, you submit your information to the ...
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"Over 6000 rare diseases are characterised by a broad diversity of disorders and symptoms that vary not only from disease to disease but also from patient to patient suffering from the same disease.

"Relatively common symptoms can hide underlying rare diseases leading to misdiagnosis and delaying treatment. Quintessentially disabling, the patients quality of life is affected by the lack or loss of autonomy due to the chronic, progressive, degenerative, and frequently life-threatening aspects of the disease.

"The fact that there are often no existing effective cures adds to the high level of pain and suffering endured by patients and their families."
A disease or disorder is defined as rare in Europe when it affects fewer than 1 in 2000. A disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time. One rare disease may affect only a handful of patients in the EU (European Union), and anothe
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EDNF's legislative goals for 2015 delivered to US Congress, in association with NORD and Rare Disease advocates:
• Increased funding for NIH and FDA (see graphic below).
• Access to affordable treatment options.
• Restoration of Social Security Disability fund reallocation rule (to avoid the 19% reduction that will affect so many of us next year).
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EDNF representatives are joining Rare Disease legislative advocates in team meetings with members of the US Congress as part of Rare Disease Week at the end of February. Let your voices be heard, too! Tell your story, and let Congress know what you think their legislative goals should be in the next year: more NIH research funding, better treatment options, better access to treatment, restoration of the Social Security Disability reallocation, or whatever you feel should be done. Your stories will be hand-delivered to the offices of your representative or Senator. http://rareadvocates.org/rdw/patientstories/
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In their circles
66 people
Have them in circles
250 people
Andrew McCluskey's profile photo
Trisha Gibson's profile photo
Bark & Howl Press Ltd.'s profile photo
Karen Phillips's profile photo
Stephanie Sinclair's profile photo
Jason Bonar's profile photo
Tammy Kosbab's profile photo
Rachel Stripes's profile photo
Singing Dragon's profile photo
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Resources for those affected by Ehlers-Danlos syndrome
Introduction
Ehlers-Danlos National Foundation creates resources for those affected by the connective tissue disorder Ehlers-Danlos syndrome. Any medical information found here should be discussed with your doctors thoroughly before taking action. Established in 1985 by Founder Nancy Hanna Rogowski (1957 - 1995), we are a 501 (c) (3) Nonprofit Organization with thousands of members across America and around the world. Our volunteers and their families are the life blood of EDNF and make a huge difference to those affected by EDS.
Contact Information
Contact info
Phone
703-506-2892
Fax
703-506-3266
Address
7918 Jones Branch Drive Suite 300 McLean VA 2210