Patient Passport - CamRARE (Cambridge Rare Disease Network)
resource
5/8/2025 2:26:17
Showing 4,414 of 4,414 items
Showing 4,414 of 4,414 items
The Mastocytosis Society Survey on Mast Cell Disorders: Part 2-Patient Clinical Experiences and Beyond - PubMed
research
5/8/2025 2:16:24
What is Mast Cell Disorder?
video
5/7/2025 11:06:20
Stretching and Hypermobility / EDS A beginner guide - The Fibro Guy
resource
5/7/2025 11:05:03
Depressive symptoms are highly prevalent and associated with fatigue and pain catastrophizing in the Hypermobility Spectrum Disorders and hypermobile Ehlers Danlos syndrome: a cross-sectional study | Rheumatology International
research
5/7/2025 11:04:26
Medicaid Work Requirements: Implications for Low Income Women’s Coverage | KFF
article
5/7/2025 11:00:09
"Efficacy of Abdominal Curl up Task As Abdominal Exercise for Diastasis" by Julia Black, Ariana Bostwick et al.
research
5/7/2025 10:57:59
7 Vitamin D Interactions You Should Know About - GoodRx
article
5/7/2025 10:56:19
Frontiers | Association of postural orthostatic tachycardia syndrome, hypermobility spectrum disorders, and mast cell activation syndrome in young patients; prevalence, overlap and response to therapy depends on the definition
research
5/7/2025 10:51:09
NIH Clinical Center disrupted by Trump cuts, immigration policy | STAT
news
5/7/2025 9:11:28
Neurodivergent Resource Toolbox
resource
5/7/2025 8:21:20
inclusive | LGBTQ vetted directory
directory
5/7/2025 8:19:50
Evaluation of Dyspnea With Exercise in Hypermobile Ehlers Danlos Syndrome and Generalized Hypermobility Spectrum Disorder | American Journal of Respiratory and Critical Care Medicine
research
5/5/2025 23:42:49
Range -Tool for Tension for Neck Muscles
product
5/5/2025 2:08:41
Evaluation of Dyspnea With Exercise in Hypermobile Ehlers Danlos Syndrome and Generalized Hypermobility Spectrum Disorder | American Journal of Respiratory and Critical Care Medicine
research
5/5/2025 2:07:40
Forced Tapering: Only Chronic Pain Patients Are Treated This Way — Pain News Network
article
5/2/2025 23:48:04
Hypermobile Ehlers–Danlos Syndrome: Diagnostic Challenges and the Role of Genetic Testing
research
5/2/2025 2:59:08
Musculoskeletal Disorders as a Public Health Concern
research
4/30/2025 3:13:59
Self-care resources from the WHO
resource
4/30/2025 3:12:17
"The Ideal Weighted Blanket Should Feel Medicinal"—We Tried The Industry’s Top-Sellers to Find Our
product
4/30/2025 2:36:53
Follow the changes: The Trump administration is overhauling healthcare policy. Follow the changes here. | Healthcare Dive
news
4/30/2025 2:34:41
Miss Vermont contestant seeks greater accessibility, inclusivity | Local News | reformer.com
article
4/30/2025 2:33:15
Long-term high-dose immunoglobulin successfully treats Long COVID patients with pulmonary, neurologic, and cardiologic symptoms - PMC
research
4/28/2025 8:10:22
Hereditary Connective Tissue Disorders | University of Miami Health System
resource
4/28/2025 1:33:01
Self Care Tasks for Adults – Mighty Bright
product
4/28/2025 1:24:01
Financial Assistance For Patients With Rare Diseases | NORD
resource
4/28/2025 1:00:37
Example of Intrafamilial Clinical Polymorphism in a Family with Osteogenesis Imperfecta
research
4/28/2025 0:58:35
Intestinal Failure in Pediatric Vascular Ehlers–Danlos Syndrome: A Case Series and Literature Review
research
4/28/2025 0:58:25
Pros And Cons Of 'Zebra Striping' Method For Alcohol | HuffPost Life
article
4/27/2025 3:39:32
The Dysautonomia Dispatch | The blog of Dysautonomia International | Page 8
blog
4/27/2025 3:32:01
Management of non-healing sternotomy wounds in Loeys-Dietz syndrome | BMJ Case Reports
research
4/27/2025 3:31:28
Frontiers | Comorbidities and neurosurgical interventions in a cohort with connective tissue disorders
research
4/26/2025 6:05:07
Success of POTS Treatment Reduced by Concurrent Anxiety
article
4/26/2025 6:02:03
Contradictions in the Criteria for Diagnosing Hypermobile Ehlers–Danlos Syndrome as Reflecting Some of the Philosophical Debates about the Threshold between the Normal and the Pathological | The Journal of Medicine and Philosophy: A Forum for Bioethics and Philosophy of Medicine | Oxford Academic
research
4/26/2025 5:48:41
Global Genes Guide to Grief - Global Genes
article
4/26/2025 5:45:59
The Beginner’s Guide to Rare Disease - Global Genes
article
4/26/2025 5:45:44
Relationship Habits That Are Signs Of ADHD | HuffPost Life
article
4/26/2025 5:42:22
Invitae Connective Tissue Disorders Panel - Clinical Genetic Test - GTR - NCBI
resource
4/25/2025 3:02:55
Magnesium Powered Bath Soaks – Flewd
product
4/24/2025 0:10:29
Dysautonomia and Hypermobility Features of Long COVID: A Multisite Cross-sectional Cohort Study - Archives of Physical Medicine and Rehabilitation
research
4/9/2025 6:31:17
Functional dyspepsia or gastroparesis? A guide to assessment, investigation and management | Frontline Gastroenterology
research
4/9/2025 6:30:06
Role of Central Sensitization Syndrome in Patients With Autonomic Symptoms | Neurology Clinical Practice
research
4/8/2025 5:56:10
Drug-Induced Myopathy: 7 Medicines That Cause Muscle Weakness - GoodRx
article
4/8/2025 5:52:58
Shop All Swaddle Blankets – Pipermoon
product
4/8/2025 0:09:20
Female Hormones Trigger Pain Relief via Immune Cells - Neuroscience News
research
4/8/2025 0:07:42
Hoolest Pro –-Vagus Nerve Stimulating Noise Cancelling Headphones
product
4/8/2025 0:06:44
5 Best Weighted Blankets To Get Better Sleep And Fight Anxiety — Sleep Review Lab
article
4/8/2025 0:05:13
Acupressure for Lower Backaches, Fatigue and Exhaustion | Acupressure | Certified Online Training
blog
4/6/2025 5:45:12
OMG how embarrassing! How to stop feeling so awkward : Life Kit : NPR
podcast
4/6/2025 5:24:23
How to 'shift' your emotions : Life Kit : NPR
podcast
4/6/2025 5:19:41
Patient Passport - CamRARE (Cambridge Rare Disease Network)
resource
5/8/2025 2:26:17
The Mastocytosis Society Survey on Mast Cell Disorders: Part 2-Patient Clinical Experiences and Beyond - PubMed
research
5/8/2025 2:16:24
What is Mast Cell Disorder?
video
5/7/2025 11:06:20
Stretching and Hypermobility / EDS A beginner guide - The Fibro Guy
resource
5/7/2025 11:05:03
Depressive symptoms are highly prevalent and associated with fatigue and pain catastrophizing in the Hypermobility Spectrum Disorders and hypermobile Ehlers Danlos syndrome: a cross-sectional study | Rheumatology International
research
5/7/2025 11:04:26
Medicaid Work Requirements: Implications for Low Income Women’s Coverage | KFF
article
5/7/2025 11:00:09
"Efficacy of Abdominal Curl up Task As Abdominal Exercise for Diastasis" by Julia Black, Ariana Bostwick et al.
research
5/7/2025 10:57:59
7 Vitamin D Interactions You Should Know About - GoodRx
article
5/7/2025 10:56:19
Frontiers | Association of postural orthostatic tachycardia syndrome, hypermobility spectrum disorders, and mast cell activation syndrome in young patients; prevalence, overlap and response to therapy depends on the definition
research
5/7/2025 10:51:09
NIH Clinical Center disrupted by Trump cuts, immigration policy | STAT
news
5/7/2025 9:11:28
Neurodivergent Resource Toolbox
resource
5/7/2025 8:21:20
inclusive | LGBTQ vetted directory
directory
5/7/2025 8:19:50
Evaluation of Dyspnea With Exercise in Hypermobile Ehlers Danlos Syndrome and Generalized Hypermobility Spectrum Disorder | American Journal of Respiratory and Critical Care Medicine
research
5/5/2025 23:42:49
Range -Tool for Tension for Neck Muscles
product
5/5/2025 2:08:41
Evaluation of Dyspnea With Exercise in Hypermobile Ehlers Danlos Syndrome and Generalized Hypermobility Spectrum Disorder | American Journal of Respiratory and Critical Care Medicine
research
5/5/2025 2:07:40
Forced Tapering: Only Chronic Pain Patients Are Treated This Way — Pain News Network
article
5/2/2025 23:48:04
Hypermobile Ehlers–Danlos Syndrome: Diagnostic Challenges and the Role of Genetic Testing
research
5/2/2025 2:59:08
Musculoskeletal Disorders as a Public Health Concern
research
4/30/2025 3:13:59
Self-care resources from the WHO
resource
4/30/2025 3:12:17
"The Ideal Weighted Blanket Should Feel Medicinal"—We Tried The Industry’s Top-Sellers to Find Our
product
4/30/2025 2:36:53
Follow the changes: The Trump administration is overhauling healthcare policy. Follow the changes here. | Healthcare Dive
news
4/30/2025 2:34:41
Miss Vermont contestant seeks greater accessibility, inclusivity | Local News | reformer.com
article
4/30/2025 2:33:15
Long-term high-dose immunoglobulin successfully treats Long COVID patients with pulmonary, neurologic, and cardiologic symptoms - PMC
research
4/28/2025 8:10:22
Hereditary Connective Tissue Disorders | University of Miami Health System
resource
4/28/2025 1:33:01
Self Care Tasks for Adults – Mighty Bright
product
4/28/2025 1:24:01
Financial Assistance For Patients With Rare Diseases | NORD
resource
4/28/2025 1:00:37
Example of Intrafamilial Clinical Polymorphism in a Family with Osteogenesis Imperfecta
research
4/28/2025 0:58:35
Intestinal Failure in Pediatric Vascular Ehlers–Danlos Syndrome: A Case Series and Literature Review
research
4/28/2025 0:58:25
Pros And Cons Of 'Zebra Striping' Method For Alcohol | HuffPost Life
article
4/27/2025 3:39:32
The Dysautonomia Dispatch | The blog of Dysautonomia International | Page 8
blog
4/27/2025 3:32:01
Management of non-healing sternotomy wounds in Loeys-Dietz syndrome | BMJ Case Reports
research
4/27/2025 3:31:28
Frontiers | Comorbidities and neurosurgical interventions in a cohort with connective tissue disorders
research
4/26/2025 6:05:07
Success of POTS Treatment Reduced by Concurrent Anxiety
article
4/26/2025 6:02:03
Contradictions in the Criteria for Diagnosing Hypermobile Ehlers–Danlos Syndrome as Reflecting Some of the Philosophical Debates about the Threshold between the Normal and the Pathological | The Journal of Medicine and Philosophy: A Forum for Bioethics and Philosophy of Medicine | Oxford Academic
research
4/26/2025 5:48:41
Global Genes Guide to Grief - Global Genes
article
4/26/2025 5:45:59
The Beginner’s Guide to Rare Disease - Global Genes
article
4/26/2025 5:45:44
Relationship Habits That Are Signs Of ADHD | HuffPost Life
article
4/26/2025 5:42:22
Invitae Connective Tissue Disorders Panel - Clinical Genetic Test - GTR - NCBI
resource
4/25/2025 3:02:55
Magnesium Powered Bath Soaks – Flewd
product
4/24/2025 0:10:29
Dysautonomia and Hypermobility Features of Long COVID: A Multisite Cross-sectional Cohort Study - Archives of Physical Medicine and Rehabilitation
research
4/9/2025 6:31:17
Functional dyspepsia or gastroparesis? A guide to assessment, investigation and management | Frontline Gastroenterology
research
4/9/2025 6:30:06
Role of Central Sensitization Syndrome in Patients With Autonomic Symptoms | Neurology Clinical Practice
research
4/8/2025 5:56:10
Drug-Induced Myopathy: 7 Medicines That Cause Muscle Weakness - GoodRx
article
4/8/2025 5:52:58
Shop All Swaddle Blankets – Pipermoon
product
4/8/2025 0:09:20
Female Hormones Trigger Pain Relief via Immune Cells - Neuroscience News
research
4/8/2025 0:07:42
Hoolest Pro –-Vagus Nerve Stimulating Noise Cancelling Headphones
product
4/8/2025 0:06:44
5 Best Weighted Blankets To Get Better Sleep And Fight Anxiety — Sleep Review Lab
article
4/8/2025 0:05:13
Acupressure for Lower Backaches, Fatigue and Exhaustion | Acupressure | Certified Online Training
blog
4/6/2025 5:45:12
OMG how embarrassing! How to stop feeling so awkward : Life Kit : NPR
podcast
4/6/2025 5:24:23
How to 'shift' your emotions : Life Kit : NPR
podcast
4/6/2025 5:19:41