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Welcome to News & Research! Here’s how to Search for a Topic
Click here to utilize our search function in order to find relevant articles containing any particular topic you are looking for.
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Research Roundup: Hypermobility and Hypermobile EDS
The latest research regarding Hypermobile Ehlers-Danlos Syndrome (hEDS), Hypermobility Spectrum Disorders, and the very exciting research results that have just begun to shine a light on one of the most difficult “rare” CTD diagnoses to obtain. Listings include a link embedded in the name of the study, the year it was published, and a credit…
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Proclamation for EDS Awareness Month in MA
May is EDS Awareness Month and there are indeed several ways to raise accurate and progressive awareness of EDS in all its types and how their “lovely” comorbidities are presented. Unfortunately, important information gets lost in the same old of stale messaging and misinformation that we have seen year after year. I am going to…
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Research Roundup: Urology
The latest research regarding Urology and the special issues encountered by CTD patients with their excretory/urinary system, including the kidneys. Listings include a link embedded in the name of the study, the year it was published, and a credit to the group member who shared it with us. Listed from most recent (top of list)…
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Research Roundup: Sleep & Sleep Disorders
The latest research regarding sleep health, sleep disorders, sleep apnea, insomnia, and other issues people with CTDs deal with in the dreaming part of their day. Listings include a link embedded in the name of the study, the year it was published, and a credit to the group member who shared it with us. Listed…
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February is Proclaimed Marfan Awareness Month in MA!
Thanks to the efforts of Jon Rodis, Debbie Mozes, and others who dedicated their time, Governor Healey has Proclaimed February 2024 as Marfan Syndrome Month. You can read more about this condition on the CTC Marfan Info Sheet, and be sure to share with your CTD friends! It could save someone’s life. Gratitude to all…
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EDS/HSD: Applying for Social Security Disability
The edited version of a webinar John Rodis and Kathleen Kane did on April 28, 2021 for the Metro DC EDS and HSD Support Group.
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Research Participation Opportunities
A bulletin board of current research projects looking for subjects or volunteers. Invisible Disability in the Workplace received December 2023 Contact Information: Michelle Perone, Ed.D(c), M.A., email:MPerone0648@csm.eduI am currently a doctoral student at College of Saint Mary in Omaha, NE in Educational Leadership with emphasis in training and development. For my dissertation, I am conducting research…
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Research Roundup: Skin, Muscle, Tissue, Healing
The latest research regarding skin and other body tissue and healing.
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Research Roundup: Vascular EDS, Marfan, and Loeys-Dietz
The latest research regarding issues specific to Vascular EDS, Marfan Syndrome and Loeys-Dietz.
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Research Roundup: Eyes/Vision
The latest research regarding optometry and ophthalmology in CTDs, from newest to oldest.
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Legislative News
A collection of news stories regarding State and Federal legislation in development, recently passed a single chamber, and signed into law that directly affect our lives with CTDs.
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Research Roundup: Genetics
The latest research in CTDs and Genetics, listed from most recent (top of list) to older resources (bottom of list).
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News: articles about Medical Research and Care
The latest news, stories, and editorials from doctors, researchers, and other professionals written to and for their peers.
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Research Roundup: Neurology
The latest research in CTDs and Neurology, listed from most recent (top of list) to older resources (bottom of list).
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Research Roundup: Musculoskeletal
The latest research in CTDs and Musculoskeletal Conditions, listed from most recent (top of list) to older resources (bottom of list).
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Research Roundup: Mast Cell Disorders
The latest research in CTDs and Mast Cell disorders, listed from most recent (top of list) to older resources (bottom of list).
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Research Roundup: Endocrinology
The latest research in CTDs and hormones, listed from most recent (top of list) to older resources (bottom of list).
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Research Roundup: Gynecology/Urogynecology
The latest research of CTDs and gynecology and urogynecology, listed from most recent (top of list) to older resources (bottom of list).
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Research Roundup: Cardiovascular
The latest research of cardiovascular issues in CTDs, listed from most recent (top of list) to older resources (bottom of list).
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Research Roundup: Dysautonomia
The latest research of Dysautonomia and CTDs, listed from most recent (top of list) to older resources (bottom of list).
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Research Roundup: Autoimmune Issues
The latest research concerning Autoimmune Connective Tissue Disorders such as RA, Lupus, Sjogrens, etc. and genetic CTDs.
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Research Roundup: Mental Health and CTDs
The latest research in CTDs, Mental Health and Wellness, Autism and other areas of Neurodivergence, listed from most recent (top of list) to older resources (bottom of list).
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Photo Contest: Our Diversity is our Strength
We are not just Zebras, are we? This contest will highlight our symbolic strengths, feelings, and skills by way of the animals we find in our lives that inspire us and keep us going.
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Initiatives: Creating an Ehlers-Danlos Awareness Month in Massachusetts
For years, Diana Cleaveland has led the effort to have May proclaimed EDS Awareness Month in Massachusetts. Here’s what it was like and what you can do!
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EDS and CTD New England/MA Support Group 