Community
Nicola Gets Help From Fiance for Her Hypermobility Syndrome
Nicola’s story brings awareness to how difficult life can be with hypermobile joints. She is fortunate to have a the help of a supportive fiance and a mother who is a retired nurse. By PETER HENN. Nicola Lynch, of Rainham, Kent, has dislocated her shoulders 80 times and her thumbs 25 times each in the six years since […]
UK Woman Spreads Awareness of Ehlers-Danlos Syndrome
Ruth Baker is telling her story to increase EDS Awareness in the UK. She shares our passion – helping even one person makes it all worthwhile. Ruth says, “It can be a lonely place when you’re suffering from something that is so rare that even doctors don’t know what you’re talking about.” Doctors need to understand that EDS is perceived as a rare disorder only because […]
#GivingTuesday brings people together to support Ehlers-Danlos organizations
Please join us this Tuesday, December 2 in our support of all EDS organizations, including the EDNF. ****** #GivingTuesday brings people together in a seasonal call to action of generosity and service in the midst of holiday shopping. Last year over 10,000 organizations in 46 countries united for #GivingTuesday. With your help this year will be […]
Firefighters in UK Raise Money for Ehlers Danlos Syndrome
Five-year-old Annabelle Griffin inspired local firefighters to perform physical feats — raising money and Ehlers Danlos Syndrome awareness in the UK. Annabelle has VEDS. FIREFIGHTERS pushed themselves to the limit scaling the UK’s three highest peaks and cycling 500 miles to raise a staggering £15,000 for charity. The group of eight men from Oldham Fire Station […]
EDS & POTs EDNF Webinar – Recording Available
Listen to this webinar about EDS and POTS. Also, watch another video of Dr. Rowe’s webinar for EDS Awareness Educational Series presented in July 2014.
EDS Awareness Educational Series – Recording Available
Listen to this FREE online learning session about EDS & Psychiatric illness misdiagnoses by Dr. Richard Barnum, Psychiatrist. How can families handle situations where they feel misunderstood by their healthcare providers? Unfortunately, many EDSers are misdiagnosed with psychiatric conditions before their Ehlers-Danlos, Dysautonomia or associated physical conditions are identified. Dr. Barnum addresses what can happen in extreme […]
“Pain Awareness Month” to raise awareness of the U.S. Pain Foundation
September is “Pain Awareness Month” in Scituate, RI and several other U.S. towns. Advocates are raising awareness of chronic pain conditions and the U.S. Pain Foundation. Stuart and Ellen Lenox Smith have been very active with the U.S. Pain Foundation and EDS Awareness for Ehlers-Danlos Syndrome. Their “Pain Awareness Event” at Miriam Hospital in Providence on Saturday, Sept. 27th will conclude […]
New Strategic Marketing Resource for Ehlers Danlos National Foundation
We are pleased to announce: Jane Mitakides has been appointed to the Ehlers-Danlos National Foundation (EDNF) board of directors. Her husband, Dr. John Mitakides, is one of our Educational Webinar speakers and a well-known EDS / TMJ expert. Jane has a background in strategic marketing and communications, and will be a valuable asset to the EDNF. She […]
