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In the News
Click on the links below to access news about Rare Disease or Ehlers-Danlos.
Inflammation-induced lymphangiogenesis and lymphatic dysfunction, by Shan Liao and Pierre-Yves von der Weid Jan. 22, 2014
Mast cells and histamine are triggering the NF‐κB‐mediated reactions of adult and aged perilymphatic mesenteric tissues to acute inflammation, Research Paper November 21, 2016
Looking out for Lipedema Landmines, by Karen Ashforth
Should There be an Increased Focus on Lipedema, the Lymphatic System, and Adipose Tissue Fibrosis in Ehlers-Danlos Syndrome, Fibromyalgia and ME/CFS?, by Jeffrey Lubell Dec. 5, 2021
Impaired Lymphatic Drainage and Interstitial Inflammatory Stasis in Chronic Musculoskeletal and Idiopathic Pain Syndromes: Exploring a Novel Mechanism, Brian Tuckey John Srbely Grant Rigney Meena Vythilingam Jay Shah Aug. 23, 2021
Psychosocial and Functional Aspects of Chronic Illness and Disability - pdf
MUSC researchers announce gene mutation discovery associated with EDS
by Leslie Cantu July 14, 2021
Hypermobile Ehlers-Danlos Syndrome: An update on Therapeutic Approaches for pain management
by Jeffrey J. Bettinger, PharmD and James Kelley, MD July 7, 2021
EDS and Puberty
by Brian Murphy, PhD Feb. 4, 2021
Study offers potential targets for treating people with Ehlers-Danlos syndrome.
by Reviewed by James Ives, M.Psych. (Editor) June 4, 2020
EDS and Tight Muscles: If my joints are so loose, why do I feel so tight?
by Mindy Nagel, PT, DPT, OCS May 21, 2020
Pathology: Part II (Could PEM be a symptom of neural strain?)
by Jennifer Brea Sept. 4, 2019
#MillionsMissing Is Raising Awareness Of This Chronic Illness Through Social Media
by James Hale May 12, 2018
Visceroptosis (displacement of various abdominal organs from their normal positions) and the Ehlers-Danlos Syndrome
by Stephen Kucera, Stephen N. Sullivan Nov. 8, 2017
Visceroptosis and the Ehlers-Danlos Syndrome
by Stephen Kucera, Stephen N. Sullivan Nov. 8, 2017
Psychiatric and Psychological Aspects in the Ehlers–Danlos Syndromes
American Journal of Medical Genetics, 2017
Ehlers-Danlos Syndrome: An Emerging Challenge for Pain Management
by Forest Tennant MD DrPH September 2017
One of the biggest myths about Chronic Fatigue Syndrome just got debunked.
by Fiona MacDonald
Feb. 22, 2017
Venous Stent Procedure Providing Relief to Some Ehlers-Danlos Patients
University of Virginia Health System
Ehlers–Danlos Syndrome—Hypermobility Type: A Much Neglected Multisystemic Disorder
by Yael Gazit, M.D, Giris Jacob, M.D, and Rodney Grahame, M.D.
Oct. 31, 2016
One Gene Mutation Links Three Mysterious, Debilitating Diseases
by, Kate Horowitz Oct. 17, 2016
NIH scientists uncover genetic explanation for frustrating syndrome
Oct. 17, 2016
2 Types of Pain Ehlers-Danlos Syndrome Causes on a Daily Basis
by, Meredith Grimsby Oct.5, 2016
What 1989 and the Golden Girls Tell Us About Medicine Today
by David Michael Connor Sept. 23, 2016
Small fiber neuropathy is a common feature of Ehlers-Danlos syndromes
July 12, 2016
Cranio-cervical Instability in Patients with Hypermobility Connective Disorders, by Fraser C. Henderson Sr. M.D, April 6 2016
About Histamine Intolerance
by Eva - Blog: the Histamine Pirate
Who Took My Collagen and How Can I get it Back?
by Rebecca Booth, HuffPost, updated Jan. 4, 2016
To the person with a chronic illness who feels like a burden
by Lindsey B, the Mighty, Dec. 1, 2015
To the Doctors of Chronic Illness Patients
by Catherine Richardson, the Mighty, Nov. 4, 2015
Cure the Process 2: One year later
Everylife Foundation, October, 2015
Celebrities and crowdfunding aid Hollywood family devastated by rare disease
by Carina Storrs, Special to CNN, June 12, 2015
A Letter to the Me who was Terrified of Our Diagnosis
by Ali Cummins, the Mighty, Nov. 5, 2014
In Hopes of Fixing Faulty Genes, One Scientist Starts with the Basics.
by Joe Palca, Oct. 13, 2014
Neurological manifestations of Ehlers-Danlos syndrome(s): A review
by Marco Castori andNicol C. Voermans, Oct. 6, 2014
Living with Ehlers-Danlos Syndrome: Sometimes I just don't have it in me to be Inspirational.
by Michael Bihovsky, May 29, 2014
Autonomic Symptom Burden in the hypermobility type of EDS.
May 13, 2014
Have Pain? Are you crazy? Rare Diseases Pt. 2
by Judy Stone Feb. 18, 2014
Sleep-Disordered Breathing in Ehlers-Danlos Syndrome: A Genetic Model of OSA, American College of Chest Physicians, Nov. 2013
Hormones & Hypermobility
by Paul Gardener June 9, 2013
Five Tough Choices You Face when Chronically Ill or in Pain
by Toni Bernhard via ProHealth, March 22, 2013
A New Syndrome:Eosinophilic Esophagitis with connective tissue disorder (EoE-CTD)
April 22, 2013
Researchers to develop new diagnostic tools and treatments for people with rare diseases
January 25, 2013
Second Skin Suit Gives New Lease of Life to Toddler whose Joints Dislocated Every Time she Played.
by Daily Mail Reporter, July 27, 2010
Effect of estrogen on tendon collagen synthesis...
Journal of Applied Physiology, April 1, 2009
Evaluation of the work-related disability in people affected by Ehlers-Danlos Syndrome
Latest in RARE News on the NORD site
Latest in RARE News on the EURORDIS site
RARE DISEASE DAY News courtesy of CBS
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