Global Scleroderma Initiative
Scleroderma Research Foundation
Scleroderma Foundation
Federation of European Scleroderma Associations (FESCA)
Wednesday, January 17, 2018
Saturday, August 26, 2017
Flexible ‘electronic skin’ patch provides wearable health monitoring anywhere on the body.
A radical new electronic skin monitor developed by Korean and U.S. scientists tracks heart rate, respiration, muscle movement, acceleration, and electrical activity in the heart, muscles, eyes, and brain and wirelessly transmits it to a smartphone, allowing for continuous health monitoring.
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| New soft electronic stick-on patch collects, analyzes, and diagnoses biosignals and sends data wirelessly to a mobile app. (credit: DGIST) |
A breakthrough new method for 3D-printing living tissues
Scientists at the University of Oxford have developed a radical new method of 3D-printing laboratory-grown cells that can form complex living tissues and cartilage to potentially support, repair, or augment diseased and damaged areas of the body.
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| The 3D droplet bioprinter, developed by the Bayley Research Group at Oxford, producing millimeter-sized tissues (credit: Sam Olof/ Alexander Graham) |
Thursday, June 29, 2017
WORLD SCLERODERMA DAY JUNE 29, 2017
Global Scleroderma Initiative
Donate to the Global Scleroderma Initiative
Scleroderma Info - Your Online Guide to Scleroderma Resources!
Thursday, June 1, 2017
Monday, May 29, 2017
Tuesday, April 18, 2017
There’s Now a Scleroderma Information Kit for Emergency Medical Responders
Because scleroderma is such a rare disease, there is a chance that some emergency service professionals haven’t come across a patient with the condition. They may not understand some of the intricacies of the disease and how best to approach caring for the patient.
The Scleroderma Foundation has released a booklet for emergency medical responders to help them better understand how to manage scleroderma patients. It highlights some of the challenges they may face, e.g., the use of a pulse oximeter may not work accurately if the patient is suffering from Raynaud’s phenomenon or pulmonary hypertension.
Source: Scleroderma News
Friday, March 31, 2017
Friday, March 17, 2017
Make Your Voice Heard on Key Scleroderma Funding
Early each year, the United States Senate crafts an annual Department of
Defense (DoD) appropriations bill, which includes a list of conditions that are deemed “eligible for study” through the Peer-Reviewed Medical Research Program (PRMRP).
In recent years, the PRMRP funded nearly $10 million in meritorious and meaningful scleroderma research projects. Research on the underlying mechanisms of scleroderma is showing relevance to all fibrosis, which occurs at higher rates among individuals who serve in the military and our veterans. The Senate included “scleroderma” as a condition eligible for study during the current year, FY 2017, and it is important that we thank key Senators on behalf of the community and ask for their support again for FY 2018.
Senators are currently working on the FY 2018 DoD appropriations bill and deciding which conditions will be included on the next PRMRP eligible conditions list. At this critical juncture, please reach out to the offices of your Senators and ask that they “support the inclusion of scleroderma in the DoD PRMRP’s eligible conditions list in FY 2018.”
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Thursday, March 16, 2017
White House Proposes Cutting $6 Billion from the National Institutes of Health Budget!
Attention Americans, the budget proposed by the White House cuts $6 billion from the budget of the National Institutes of Health (NIH). That is $6 Billion dollars, much of it being cut from medical research. The proposal phrases it as follows: "[The Budget]...rebalances Federal contributions to research funding." "[The Budget]...helps focus resources on the highest priority research." That sounds foreboding for rare diseases such as Scleroderma.
We cannot stand by and let this happen, especially us! We need to raise our voices and call our representatives and tell them this cannot happen and tell them why. We need to raise Scleroderma awareness in Congress and in the White House! Tell them your stories, your families' stories, your friends' stories, etc. Tell Congress BEFORE they vote on the budget! Take action now!
Take a look at the NIH website to see what they do https://www.nih.gov/
Call and email all your Congressional Representatives. If you don't know who they are follow these links to find out:
House of Representatives:
http://www.house.gov/representatives/find/
Senators
https://www.senate.gov/senators/contact/
We cannot stand by and let this happen, especially us! We need to raise our voices and call our representatives and tell them this cannot happen and tell them why. We need to raise Scleroderma awareness in Congress and in the White House! Tell them your stories, your families' stories, your friends' stories, etc. Tell Congress BEFORE they vote on the budget! Take action now!
Take a look at the NIH website to see what they do https://www.nih.gov/
Call and email all your Congressional Representatives. If you don't know who they are follow these links to find out:
House of Representatives:
http://www.house.gov/representatives/find/
Senators
https://www.senate.gov/senators/contact/
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