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COVID-19 and Scleroderma

Posted by on Mar 14, 2020 in Blog | Comments Off on COVID-19 and Scleroderma

In this trying time of the coronavirus pandemic, specific data about how it affects Scleroderma patients is sparse. What is more available, but still insufficient, is data on how it affects people with conditions caused by Scleroderma, like ILD and cardiomyopathy. There are a lot of questions such as if people on immunosuppression should stop their treatment. Here are some useful links for more information and answers to some of these questions.
I. Scleroderma COVID-19 Resources
II. General COVID-19 Resources
III. COVID-19 Resources for Clinicians & Researchers

Scleroderma COVID-19 Resources

Scleroderma Foundation:
https://bit.ly/38RKEVG

Johns Hopkins Scleroderma Center:
https://rheum.tv/rheumtv/covid-19-coronavirus-information-for-rheumatic-disease-patients/?fbclid=IwAR0ybpXv7v_kfWyPdOJ2druUQvLufYNoqGEmJZqSq0IDFMGW2BvxQv7vSqY

EULAR Guidance for patients with rheumatic musculoskeletal diseases (RMDs) about COVID-19 outbreak. Protect yourself & others. Read the full guidance:
https://m.youtube.com/watch?v=WnNS1SLLEng&feature=youtu.be

American College of Rheumatology (ACR): https://www.rheumatology.org/announcements

From our friends at Creaky Joints:
https://awareness.creakyjoints.org/coronavirus/

MUST WATCH: Scleroderma and COVID 19: A Conversation with the Experts https://www.youtube.com/watch?v=MT9RJ3-BqTs

General COVID-19 Resources

Check Your Risk for COVID-19; From Emory University School of Medicine https://c19check.com/start

State Data and Policy Actions to Address Coronavirus: https://www.kff.org/health-costs/issue-brief/state-data-and-policy-actions-to-address-coronavirus/

Centers For Disease Control (CDC):
https://www.cdc.gov/coronavirus/2019-nCoV/index.html

COVID-19 App and Website by Apple and the CDC:
iOS: https://apps.apple.com/us/app/id1504132184
Website: https://www.apple.com/covid19

COVID-19 Tracker App by HealthLynked:
iOS: https://apps.apple.com/us/app/healthlynked-covid-19-tracker/id1500575377
Android: https://play.google.com/store/apps/details?id=com.healthlynked

Consumer Reports: How to Protect Yourself From Coronavirus When Grocery Shopping https://bit.ly/33vtrQX

COVID-19 Resources for Clinicians and Researchers

COVID-19 Global Rheumatology Alliance
https://rheum-covid.org/

AMA COVID-19 (2019 novel coronavirus) Resource Center for Physicians https://www.ama-assn.org/delivering-care/public-health/covid-19-2019-novel-coronavirus-resource-center-physicians

National Institutes of Health (NIH):
https://www.nih.gov/health-information/coronavirus

Digital Health and Medicine:
https://www.digital.health/covid-clinical

InfoHub: Coronavirus Disease (COVID-19):
https://covid.idmod.org/#/

Nature: The proximal origin of SARS-CoV-2
https://go.nature.com/2UhP1Eh

Looking for medical clinical and research supplies? Check this out from the Biotechnology Innovation Organization (BIO)!
https://hub.bio.org/

Accelerating health care innovation by connecting engineering and medicine

Posted by on Dec 28, 2018 in Blog | Comments Off on Accelerating health care innovation by connecting engineering and medicine

Artificial heart valves, prosthetic hips, bedside monitors, MRI machines – these and so many other innovations that we now take for granted emerged at the interface of engineering and medicine.

GSI Attending Conferences

Posted by on Sep 12, 2017 in Blog | Comments Off on GSI Attending Conferences

The Global Scleroderma Initiative will be attending more conferences in addition to the Exponential Medicine conference in November. See below for some on the schedule.

September 12, 2017 – EveryLife Foundation for Rare Diseases – Emerging Technologies for Rare Diseases: Clinical and Regulatory Case Studies and Approval Pathways (online) http://action.everylifefoundation.org/o/51556/p/salsa/event/common/public/?event_KEY=9691

September 13, 2017 – New York Academy of Sciences (NYAS) – Mitochondria and Medicine https://www.nyas.org/events/2017/mitochondria-and-medicine-the-2017-dr-paul-janssen-award-symposium/

September 15, 2017 – Johns Hopkins Scleroderma Center – Scleroderma Day 2017 https://www.hopkinsscleroderma.org/

October 2-3, 2017 – BIO Patient and Health Advocacy Summit – 2017 Patient Health and Advocacy Summit. https://www.bio.org/events/bio-patient-advocacy-summit 

 

 

Exponential Medicine

Posted by on Sep 1, 2017 in Blog | Comments Off on Exponential Medicine

Hello Everyone,

The Global Scleroderma Initiative is officially registered to attend the Exponential Medicine conference in November. The medical and healthcare tech professionals on the front lines of innovative medicine and technology will be there to share the exciting and innovative projects they are working on and together, brainstorm more innovations and implementation of those innovations into the healthcare ecosystem now. The future of medicine is here and GSI will bring scleroderma healthcare into the future as the future arrives, instead of catching up later. Just because scleroderma is a rare disease doesn’t mean it has to sit on the back burner of innovation. Here’s to improving the lives of scleroderma patients and finding a cure sooner!

Michael Benjamin

Click Here for More about Exponential Medicine

Our new and improved website!

Posted by on Jul 28, 2017 in Blog | Comments Off on Our new and improved website!

Welcome everyone to our new and improved website and the OFFICIAL launch of the Global Scleroderma Initiative. Take a look around. If you have any question, comments suggestions or want to work with or partner with us, please use the contact page to send us a message! You can also use the convenient social media share buttons at the bottom of the page and you can find links to our social media sites on the right side of this page.

Thank you for visiting and spread the word about Scleroderma!

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New Blog Section!

Posted by on Jul 25, 2017 in Blog | Comments Off on New Blog Section!

Welcome to the new Blog section. We will provide information on activities and updates about the Global Scleroderma Initiative. Stay tuned for news!