Scleroderma Foundation YouTube Channel

Check out the Scleroderma Foundation YouTube Channel

Scleroderma Foundation YouTube Channel

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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.”  Follow this link to learn more and reach out to the senators in your state.

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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/

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A Glimpse at the Business of Scleroderma

Global Scleroderma Diagnostics and Therapeutics Market is Expected to Reach US$3,663.7 mn by 2024

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Corbus to Present Promising Data on Resunab as Systemic Sclerosis Treatment

Corbus Pharmaceuticals will present results showing that Resunab (JBT-101), the company’s cannabis-derived treatment for systemic sclerosis (SSc), can trigger specific molecular pathways which resolve inflammation and halt fibrosis.

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Rare Disease Day Highlights Need for More Research Into Scleroderma

Last week’s Rare Disease Day had one overarching topic: research! Rare diseases are often overlooked by governments around the world when it comes to financing important research. They tend to use taxpayer dollars to fund research into more well-known diseases.

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