Scleroderma
HARD WORD. HARDER DISEASE. We’ll make it easier for you. Help us make it easier for them - Scleroderma Aware
image by: Scleroderma Strong
Resources
Project Scleroderma
Project Scleroderma’s primary mission is to raise the global level of Scleroderma awareness and to encourage support of Scleroderma research. The organization’s goal is to help give Scleroderma patients a platform to voice their stories and an opportunity to champion for their cause.
New Understanding of Genes May Lead To New Scleroderma Treatment
New insights into the workings of genes are bringing hope for a revolution in scleroderma research and scleroderma treatment. Scleroderma (also called systemic sclerosis) stiffens connective tissue and decreases blood vessel formation throughout the body, scarring the skin and triggering potentially lethal damage to vital organs.
Flipping the Switch on Scleroderma
Neubig, along with several of his colleagues from the University of Michigan, have identified the core signaling pathway that activates the disease and the chemical compounds that can turn it off.
Project Scleroderma: Beneath The Surface
Scleroderma is an autoimmune disease characterized by hardening and thickening of the skin. Scleroderma is the third most common autoimmune connective tissue disease (following Rheumatoid Arthritis and Systemic Lupus). It is more common in females than males (4-8:1 female to male). Scleroderma affects all racial groups and all ages.
‘I feel like I’ve been left to die in a desert’: Man recounts painful history with scleroderma
"As many people have scleroderma as they do MS, lupus and other diseases of that nature, but nobody knows what it is because it's not the 'sexy' illness," Goldstein told the Daily News. "People don't even like to look at us."
Scleroderma News
Scleroderma News is committed to publishing the latest news and information about Scleroderma in a format that those with the disease as well as their families can understand. Our staff of writers include professional journalists and researchers alike who source and publish news articles daily.
Sclero.org
SCLERO.ORG is operated by the International Scleroderma Network, which is a full-service U.S. nonprofit 501(c)(3) established in 2002. We provide stellar worldwide research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension.
Scleroderma Angel Foundation
The Scleroderma Angel Foundation is a group of patients, loved ones, concerned citizens and providers dedicated to the goal of increased awareness of Scleroderma and related disorders. The aim is to promote awareness through education, and public discourse with an attitude of conviction and purpose that is essential to dealing with these extremely difficult disorders.
Scleroderma Aware
HARD WORD. HARDER DISEASE. We’ll make it easier for you. Help us make it easier for them.
Scleroderma Canada
The Scleroderma Society of Canada serves as an advocate nationally for those affected by the disease and works collaboratively with regional scleroderma organizations and the international scleroderma community to achieve common objectives.
Scleroderma Clinical Trials Consortium
The Scleroderma Clinical Trials Consortium (SCTC) is a charitable non-profit organization dedicated to finding better treatment for scleroderma. Member institutions of the SCTC conduct clinical treatment trials of new (and sometimes old) medications that appear promising for the treatment of scleroderma.
Scleroderma Foundation
The Scleroderma Foundation has been fighting to spread awareness and help educate the public about this devastating disease for more than 15 years. Please join the fight and stand alongside us for June's Scleroderma Awareness Month. Help us put an end to "sclero-what?"
Scleroderma Research Foundation
SRF was established in 1987 by patient turned activist Sharon Monsky, when research on this potentially life threatening illness was nearly nonexistent. Since our founding, we’ve stood firm in our belief that the best way to help scleroderma patients is to fund the most promising medical research aimed at improved therapies and a cure. The SRF is America's largest nonprofit investor in scleroderma research.
Scleroderma Trial
SCOT is a clinical research study designed for people with severe forms of scleroderma. SCOT stands for Scleroderma: Cyclophosphamide Or Transplantation. The SCOT study will compare the potential benefits of stem cell transplant and high-dose monthly cyclophosphamide (Cytoxan) in the treatment of scleroderma.
Steffens Scleroderma Foundation
Named in memory of Ann Elizabeth Steffens, a scleroderma patient who had an unparalleled desire to make a difference, the foundation was made possible by a generous gift from her mother, Helen Polenz. We proudly carry on Ann’s spirit of helping others and one day hope to spare families from losing a loved one to these diseases.
American College of Rheumatology
Scleroderma (also known as systemic sclerosis) is a chronic disease that causes the skin to become thick and hard; a buildup of scar tissue; and damage to internal organs such as the heart and blood vessels, lungs, stomach and kidneys. The effects of scleroderma vary widely and range from minor to life-threatening, depending on how widespread the disease is and which parts of the body are affected.
Chronic Brevity: Living with Scleroderma
I live with multiple auto-immune diseases including: Scleroderma, Lupus, and Hypothyroidism. If you want to learn more, read my blog...duh!
Federation of European Scleroderma Associations
Welcome! We are FESCA – Federation of European Scleroderma Associations aisbl; an umbrella group of scleroderma patient support-and-advocacy organisations working to increase awareness, and advocate for equitable treatments for people with scleroderma throughout Europe.
Food Fight for Scleroderma
All net proceeds from Food Fight will be donated to the Scleroderma Foundation to support its three-fold mission of SUPPORT, EDUCATION and RESEARCH.
Juvenile Scleroderma Network
Our mission is to provide emotional support and educational information to parents and their children living with juvenile scleroderma; to support pediatric research to identify the cause and the cure for juvenile scleroderma; to enhance the public's awareness of juvenile scleroderma and related diseases.
Living with Scleroderma
I started this blog to document the whirlwind of events that we’ve been going through ever since my diagnosis. It’s not easy being sick, but with the love and support of the people around me, it makes me more hopeful… that everything will turn out ok!
National Institute of Arthritis and Musculoskeletal and Skin Diseases
Scleroderma is more common in women than men. Anyone can get it, even children. Most localized types show up before age 40, and are more common in people of European descent than in African Americans. Systemic types are more common in people aged 30 to 50 and are more common in African Americans than in people of European descent.
Scleroderma Blog
So if you're looking for information on scleroderma, and you are using the Internet as your source, please take anything you find with a grain of salt, even if you seem the same info on multiple medical sites.
Johns Hopkins Scleroderma Center
While the doctors at The Johns Hopkins Scleroderma Center search for a cure for scleroderma, they are successfully treating the disease manifestations and reducing the suffering caused by scleroderma. They also educate patients and their families about scleroderma and what is the best treatment approach.
MayoClinic
Scleroderma (skleer-oh-DUR-muh) is a group of rare diseases that involve the hardening and tightening of the skin and connective tissues — the fibers that provide the framework and support for your body.
MedicineNet
Scleroderma is an autoimmune disease of the connective tissue characterized by skin thickening, spontaneous scarring, blood vessel disease, and varying degrees of inflammation, associated with an overactive immune system.
MedlinePlus
No one knows what causes scleroderma. It is more common in women. It can be mild or severe. Doctors diagnose scleroderma using your medical history, a physical exam, lab tests, and a skin biopsy. There is no cure, but various treatments can control symptoms and complications.
StatPearls
Scleroderma is a connective tissue disorder characterized primarily by the thickening and hardening of the skin. The combining form “sclero” means "hard" in Greek, and the word “dermis” means skin.
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