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UK Rare Diseases Framework Opens to Improve Diagnosis, Access to Care
U.K. Rare Diseases Framework, a government-led approach to raising national awareness of rare disorders, accelerating ...
More from Sclerodema News
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TMB-003 Therapy to Reduce Scarring Wins FDA Orphan Drug Designation
Scleroderma treatment TMB-003, which aims to improve patients’ quality of life by reducing the scarring ... -
Blood Levels of Protein Common to Lungs May Mark Progression in SSc-ILD
A glycoprotein called Krebs von den Lungen‐6 (KL-6), known to indicate lung inflammation, shows promise ... -
Analysis: Therapies Equally Effective in African Americans with SSc-ILD
African Americans with interstitial lung disease (ILD) caused by scleroderma (SSc-ILD) had largely similar outcomes compared ... -
Acknowledging That This Time, I Need Help
Sometimes life deals a hand that tests us. We then look for ways to overcome ... -
Tracleer for Digital Ulcers Lowers PH Risk in Scleroderma, Study Finds
People with scleroderma who were treated with Tracleer (bosentan) to prevent digital ulcers — open sores ... -
Osteopontin Protein May Be Cause of Lung Scarring in Scleroderma
Osteopontin, a protein known to play a role in tissue regeneration, immune system regulation, and ... -
Scleroderma Patients at Higher Risk of Cardiovascular Diseases, Review Finds
People with scleroderma are at a higher risk of developing diseases that affect the heart ... -
Self-love Is the Best Love
Being a caregiver can be a huge balancing act. Some caregivers do this for a ... -
More Than 40% of Scleroderma Patients Have Bone Density Loss, Study Finds
More than 40% of scleroderma patients are diagnosed with osteopenia (loss of bone mass) or ... -
Brain Cancer Found in 2 Immunosuppressed Scleroderma Patients, Case Series Reports
Brain cancer associated with a viral infection was found in two people with scleroderma after ... -
Standing By My Mother During Health Challenges
As my mother’s caregiver, I had to learn how to be there for her without ... -
Meds or No Meds?
I used to save my empty pill bottles, thinking a Pinterest craft would catch my ... -
FDA Grants Orphan Drug Designation to ACE-1334 for Scleroderma
The U. S. Food and Drug Administration (FDA) has granted orphan drug designation to ACE-1334, an ... -
Documentary ‘Beyond Breathless’ Highlights Interstitial Lung Disease
A new documentary, “Beyond Breathless,” will showcase the journey of those affected by interstitial lung ... -
BioInvent to Produce CAN10, Cantargia’s Antibody for Scleroderma, Under New Deal
Cantargia‘s antibody CAN10, intended to treat people with scleroderma and myocarditis, will be produced by BioInvent under the ... -
Survey Finds COVID-19 Disrupted Care, Well-Being of Rare Disease Patients in Europe
The first wave of COVID-19 in Europe severely disrupted access to care and raised stress and ... -
Proteins Linked to Scarring, Immune Cell Activation Found at High Levels in dcSSc
Proteins involved in scarring and the escape of immune cells from blood vessels towards nearby ... -
LOX Enzyme May Serve as Scleroderma Biomarker, Therapeutic Target
The molecule lysyl oxidase (LOX) plays key roles in promoting skin and lung scarring in ... -
My Diagnosis Was Gut-wrenching, but Life Gets Better
The phone rang on a Friday night. I answered it thinking the call probably was ... -
Lenabasum Eases Pulmonary Decline in dcSSc Patients on Long-term Immunosuppressants, Trial Finds
Updated results from the RESOLVE-1 Phase 3 clinical trial show that treatment with lenabasum reduces lung function ... -
Long-term Ofev Safely Slows Lung Function Decline in SSc-ILD Patients, Trial Data Show
Long-term treatment with Ofev (nintedanib) safely and effectively slows lung function decline in adults with ... -
Can Someone Pass Me Life’s Handbook?
In my mom’s life, I am more than a caregiver. I became one at a ... -
Learning How to Recharge After Trauma
Coming home from the hospital should be a time of smiles and celebration — especially ... -
Ofev Slows Disease Progression in SSc-ILD, Data Shows, Supporting Therapy’s Benefits
Ofev (nintedanib) slows clinically relevant disease progression in adults with interstitial lung disease (ILD) associated with systemic ... -
Galectin-3 Protein May Be Blood Biomarker for Scleroderma and Like Diseases
Elevated blood levels of a protein called galectin-3 can help diagnose people with rheumatic diseases ... -
Genetic Profile Models Show Potential to Predict Person’s Scleroderma Risk
Genomic risk scores (GRS), which predict the likelihood of developing a condition based on a ... -
High Levels of S100A12 Protein May Increase Severity of Scarring, ILD, Study Suggests
Elevated blood levels of the S100A12 protein, a type of danger signal released by skin ... -
Overall Health Benefits Found With Abatacept in dcSSc Patients After 18 Months
Treatment with abatacept led to a reduction in skin stiffening and disability, as well as ... -
Machine Learning Helps Predict Stem Cell Transplant Outcomes, Study Suggests
Using a computer-based analysis to profile gene activity in blood samples may help identify the ... -
I’m Stronger Than Scleroderma
Who am I? On some days, I don’t know how to answer that question. But ... -
First Patient Treated in Trial Testing FCX-013 Gene Therapy for Localized Scleroderma
A Phase 1/2 clinical trial of FCX-013, Castle Creek Biosciences‘ experimental gene therapy for moderate to ... -
Stem Cell Transplant Improves Quality of Life in Scleroderma Patients, Study Indicates
Autologous hematopoietic stem cell transplant (AHSCT) — replacing patients’ damaged bone marrow with their own ... -
So You Wanna Talk About Mothers?
It’s challenging to inherit the mother’s role. Some moms fade in involvement as parents while ... -
Talaris Raises $115M for Clinical Trials Testing FRC001 Cell Therapy for dcSSc
Talaris Therapeutics has raised $115 million in financing, which will be used to support the ... -
AURORA Trial of CIVI030 for Raynaud’s Due to Scleroderma Resumes Patient Enrollment
A Phase 3 trial testing iloprost, known as CIVI030, for the treatment of Raynaud’s phenomenon ... -
Study: Pandemic Increases Anxiety, But Not Depression, in Scleroderma Patients
Following the onset of the COVID-19 pandemic, people with scleroderma experienced substantial increases in anxiety, but ... -
Capillary.io Software Aims to Make Diagnosing Scleroderma Easier, Faster
A new computer software, called Capillary.io, uses artificial intelligence (AI) to aid in diagnosing scleroderma at early disease stages. ... -
Study Suggests TL1A Protein as Therapeutic Target for Lung Fibrosis
A protein known as TL1A drives lung fibrosis, or scarring, in scleroderma, a new study suggests. ... -
Scleroderma More Severe in People With Muscle Involvement, Study Finds
Muscular involvement is linked with more severe symptoms in people with scleroderma, affecting heart, lungs ... -
Bob Saget, Susan Feniger to Host Oct. 18 Cool Comedy – Hot Cuisine, Benefiting SRF
Bob Saget will return to host the 34th annual Cool Comedy – Hot Cuisine fundraiser, benefiting the ... -
Rituximab Plus CellCept Durably Improves Lung Function in Refractory SSc-ILD, Study Suggests
Rituximab, in combination with CellCept (mycophenolate mofetil), reverses the decline in lung function in people ... -
Study Describes 12 Cases of Lung Cancer in Women With Scleroderma
Detailed characteristics of 12 cases of lung cancer in people with scleroderma were described in ... -
Lenabasum Fails to Show Efficacy in Diffuse Cutaneous SSc, Phase 3 Trial Shows
Treatment with lenabasum failed to outperform a placebo when given as an add-on to standard ... -
Enroll now for the Phase 2 Trial of CellCept Plus Esbriet for SSc-ILD
The Scleroderma Lung Study III (SLSIII), a Phase 2 clinical trial of oral CellCept (mycophenolate mofetil) alone ... -
Xperiome Platform Aims to Streamline Searches for Rare Diseases, Gain Patient Input
Raremark, an online rare disease patient community, has launched a digital platform called Xperiome, aimed ... -
Scleroderma Patients Lacking Hallmark Autoantibodies Form Distinct Subset
People with scleroderma who lack disease-related autoantibodies show a clinically distinct profile, which includes younger ... -
EveryLife Foundation Launches Scholarship Fund for Rare Disease Community in US
The EveryLife Foundation for Rare Diseases has launched a scholarship fund in the U.S. to ... -
Infections Needing Hospital Stay Costly for Scleroderma Patients in US
Pneumonia and sepsis are the most common serious infections among scleroderma patients needing hospitalization in the U.S., ... -
New Streaming Channel Showcases Rare Disease Films
When the COVID-19 pandemic forced the postponement of a rare disease film festival originally slated ... -
FLI1 Gene Variant Linked to Increased Scleroderma Risk, Greater Skin Thickness in Study
Long stretches of DNA repeats in the FLI1 gene — which gives instructions for a ... -
1st Patients Dosed, Enrollment Open in Phase 2a Trial of CBD Therapy EHP-101 for dcSSc
The first patients have been dosed in a Phase 2a clinical trial of EHP-101, Emerald ... -
Cell Therapy FCR001 to Enter Phase 1/2a Trial for Diffuse Cutaneous SSc
Talaris Therapeutics plans to initiate a Phase 1/2a trial to test its investigational cell therapy, ... -
Sleep Apnea Linked to High Blood Pressure in Lungs of Adults With Scleroderma
Obstructive sleep apnea (OSA) is associated with an increased risk of pulmonary hypertension in people with scleroderma, ... -
ACR CRISS Score a Reliable Measure of Therapy Effectiveness in dcSSc Patients
The American College of Rheumatology Combined Response Index in diffuse cutaneous systemic sclerosis (ACR CRISS) appears to be ... -
National Survey Seeks to Assess Full Social, Economic Burdens of Rare Diseases in US
The EveryLife Foundation for Rare Diseases has launched a nationwide National Burden of Rare Disease ... -
Orencia Shows Promise in Treating Localized Scleroderma in Children, Adults
Orencia (abatacept) — an approved medication for juvenile idiopathic arthritis and other inflammatory conditions — ... -
CellCept, Cyclophosphamide Both Improve Patient-reported Outcomes in SSc-ILD, Phase 2 Data Show
CellCept (mycophenolate mofetil) and cyclophosphamide can both improve the health-related quality of life of people ... -
Rheumatology Expert to Lead Scleroderma Program at Cedars-Sinai’s Kao Institute
Francesco Boin, a nationally recognized rheumatologist, has taken over as director of the division of ... -
Shear-wave Elastography May Best Capture Changes in Skin Stiffness
A form of ultrasound imaging called shear-wave elastography (SWE) is more sensitive for assessing changes ... -
Coalition Will Address Racial Disparities in Rare Disease Communities
The Black Women’s Health Imperative (BWHI) recently created a Rare Disease Diversity Coalition focused on ... -
Virtual Walks, Other Activities to Spotlight Scleroderma Awareness Month
Social distancing might thin the crowds, but it won’t stop the walks, runs, and other ... -
TLY012 Receives FDA Orphan Drug Status for Systemic Scleroderma
The U.S. Food and Drug Administration has granted orphan drug designation to Theraly Fibrosis’ TLY012 ... -
COVID-19 Delaying Rare Disease and Gene Therapy Trials, Pharma Execs Say
While the ongoing COVID-19 pandemic won’t have much of an impact on cash available for ... -
Experts Issue Guidance for Care of Scleroderma Patients During COVID-19
With the World Scleroderma Foundation (WSF)’s support, experts worldwide answered questions in the form of ... -
Rare Diseases Clinical Research Network Opens Online Survey on COVID-19
The Rare Diseases Clinical Research Network (RDCRN) has opened an online survey to better understand ... -
Lenabasum Use Seen to Lessen Inflammation, Fibrosis in Phase 2 dcSSc Trial
Treatment with lenabasum is safe and leads to clinically meaningful improvements in people with diffuse ... -
Early Use of Triple Combo Seen to Treat Diffuse Cutaneous Scleroderma
A triple combination of prednisolone, cyclophosphamide and plasma exchange (plasmapheresis) was effective against skin thickening in ... -
Surge in Telemedicine One ‘Good’ Outcome from COVID-19 Crisis, Doctors Say
While there are few silver linings to the cloud created by COVID-19, the pandemic that ... -
Ofev Approved in Europe for SSc-ILD Treatment in Adults
The European Commission has approved Ofev (nintedanib) to preserve lung function in adults with systemic ... -
Blocking CCR2 Protein May Ease Scleroderma Symptoms, Mouse Study Suggests
Blocking the CCR2 protein reduced dermal tightening, lung fibrosis (scarring), and the infiltration of immune ... -
Horizon Plans to Advance Oral dcSSc Therapy in Trials, Having Acquired Curzion
Horizon Therapeutics announced it plans to pursue the development of HZN-825, a potential therapy for ... -
Phase 2 Trial to Test Cannabidiol-derived EHP-101 in Diffuse Cutaneous Scleroderma
Emerald Health Pharmaceuticals has launched a clinical trial evaluating EHP-101, its investigational cannabidiol-derived therapy, in ... -
Canada Clears EHP-101, Possible Cannabidiol-derived Treatment
The active ingredient in EHP-101 — known as VCE-004.8, derived from synthetic cannabidiol — is not classified ... -
Subset of Immune B-Cells Linked to Vascular Damage in Some Patients, Study Suggests
Levels of a subtype of immune B-cells in the blood are increased in some people ... -
Vitamin E, Pentoxifylline and TheraBite System Ease Lockjaw, Small Study Suggests
Using vitamin E, pentoxifylline, and the TheraBite Jaw Motion Rehabilitation System may help reduce trismus ... -
With Scleroderma, Exercise Comes at a Cost
My cardiologist has given me the OK to go back to the gym. I’ve been ... -
Finding the Glimmer of Gold Amid the Sludge of Scleroderma
It has been a long few weeks of dealing with recurrent benign paroxysmal positional vertigo ... -
Grappling with My Identity as a Scleroderma Patient
It’s been an eventful couple of weeks. I am currently dealing with several crises at ... -
When Choosing My Medical Team, It’s All About Attitude
In my last column, I promised to share my experience with a new cardiologist, as ... -
Finding Hope in the Hospital Despite Adversity
Last week began like any other. I usually play catch-up on Monday, my favorite day ... -
Puzzles Enable Me to ‘Armchair Travel’ with Scleroderma
I complete many jigsaw puzzles as I rest in my recliner. I find puzzles to ... -
Navigating the Uncharted Waters of Scleroderma
I like to read online about how other patients experience systemic scleroderma, especially when I ... -
Is a ‘Normal Life’ Possible with Scleroderma?
This morning I went for a walk. I’m trying to introduce this daily activity into ... -
How I’m Surviving My Worst Waiting Room
I’ve had a rough run lately. Three separate kidney infections, medications to treat them, and ... -
My Scleroderma Seminar Trip Was Just What the Doctor Ordered
The last two weeks have been extremely challenging. Living the scleroderma lifestyle means I never ...