#SclerodermaAwarenessMonth – The Scleroderma and Fibrosis Research Enhancement Act

June is Scleroderma Awareness Month, which means the scleroderma community will be coming together to raise awareness of the disease and money for vital research into better treatments and ultimately, to find a cure.

Read our columnist, Nicola Whitehill’s patient profiles campaign for Scleroderma Awareness Week.

There are many things that you can do to help the campaign, one of which is to support the Scleroderma and Fibrosis Research Enhancement Act. According to the Scleroderma Foundation, two members of Congress — Lois Capps from California and Peter King from New York — are heading up legislation to advance research into fibrotic diseases, with scleroderma being used as the prototypical disease for research due to how the condition manifests throughout a sufferer’s body.

The act aims to:

• Create a commission consisting of leading scientists who will work together to come up with a long-term plan for organized and systemic research into fibrotic diseases.
• Create a working group which will assist the National Institutes of Health (NIH) to implement the plan and coordinate research.
• Put a stop to the millions of deaths from chronic fibrotic diseases, such as scleroderma, through a timely scientific process.
• Be supported by both Republicans and Democrats.
• Be budget neutral — not increasing federal spending.
• Non-disease specific — aiming to help all fibrotic diseases as well as scleroderma.

How can you help? You can help by contacting your local congressman or congresswoman and ask them to support the Scleroderma and Fibrosis Research Enhancement Act.

Find out more ways that you can help Scleroderma Awareness Month here.

Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.