Scleroderma Foundation Weekly eLetter

Scleroderma Foundation

Scleroderma Foundation eLetter

eLetter #366

Greetings!

UPDATE on the Scleroderma Research and Awareness Act

Last week's Scleroderma Foundation National Congressional Call-in Day on Wednesday the 15th was a tremendous success and showed us, once again, the collective power of the scleroderma community's voice when we all work together.

In our last eLetter, we reported that the day after our collective efforts, the Scleroderma Research and Awareness Act was unanimously approved by the Energy and Commerce Health subcommittee in the U.S. House of Representatives.

We are pleased to further report that yesterday, the Scleroderma Research and Awareness Act officially passed the House Committee on Energy and Commerce.

This means that the bill is now cleared for consideration on the floor of the House of Representatives. As of now, we have not heard anything concrete on when exactly the bill will be considered on the House floor. What we have heard via online sources, is that things are looking positive for the bill to be considered next week. This moves us even closer to full passage of the bill in the U.S. House.

The Scleroderma Foundation will continue to keep you updated on this important initiative.

PHA Online Meeting for Patients with PH

This is an informative time for patients with PH. There is a wealth of available, effective, and approved PH medications, and many new experimental medications on the way.

The Pulmonary Hypertension Association is offering an online session for patients with pulmonary hypertension on Tuesday, September 28th at 2:00 p.m., EST.

In this session PHA will explore the side effects that may arise as a result of new treatments.

The meeting will be hosted by Karen Fagan, MD, Chief, Division of Pulmonary and Critical Care Medicine Alice and John Tanner Chair in Pulmonary Medicine University of South Alabama.

Dr. Fagan has been treating patients with PH for over 15 years. She currently heads the PH center and the Division of Pulmonary and Critical Care Medicine at the University of South Alabama. She is active in PHA, serving on the Scientific Leadership Council and working on PHA's medical journal, Advances.

To register for this important online meeting, please

Fact Sheet: The Affordable Care Act's New Patient's Bill of Rights

A major goal of the Affordable Care Act - the health insurance reform legislation signed into law on March 23 - is to put American consumers back in charge of their health coverage and care. Find out how these new rules will help you!

for more information on the useful fact sheet.

Financial Information on Medicare Savings Programs

Medicare Savings Programs (MSPs) help millions of people with Medicare save money each year. States have programs for people with limited income and resources that pay some or all of Medicare's premiums and may pay Medicare deductibles and coinsurance.

Learn about the financial support programs in your state by clicking here!

Study Suggests that Biofeedback Can Help Alleviate Raynaud's Disease Symptoms

Research by members of the Association for Applied Psychophysiology and Biofeedback demonstrated that thermal biofeedback is especially effective in the treatment of primary Raynaud's Disease, with some reports indicating that 80-90% of patients report improved circulation and a reduced frequency of symptoms.

To read about the research, click here

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