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Scleroderma Foundation
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eLetter #726 | September 1, 2017  

Labor Day, September 4

SF iconThe Scleroderma Foundation National Office will be closed on Monday, September 4, in observance of Labor Day. 
How to Prepare for an Emergency or Disaster When You Have Lung Disease or a Sleep Disorder

ats-logo.gifThis helpful guide from the American Thoracic Society helps you plan ahead for an emergency if you have a lung disease or a sleep disorder. This two-page document covers a range of information to consider so you can react confidently if you have to evacuate or shelter in place.

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Healthcare Ready - Disaster Preparedness Tool for Medications & More

Healthcare ReadyHealthcare Ready has activated its virtual Emergency Operations Center (EOC) to support healthcare and public health response operations to Tropical Storm Harvey. Among the resources the organization offers is Rx Open, a free online map that shows open pharmacies in affected areas. It is operating now for Texas and Louisiana. Healthcare Ready is a non-profit supported by both public and private sector partners that works to ensure patient access to healthcare, including medicines, during times of disaster. 

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PHA On the Road, Pittsburgh, Penn

Saturday, Sept. 9, 2017; 8 .m. to 4:30 p.m.

PHA On the RoadAre you prepared to communicate and advocate for yourself in a PH emergency? PHA on the Road is a FREE day-long event for patients and families living with PH and associated conditions. This program offers interactive presentations, educational sessions and networking opportunities for patients, caregivers and PH medical experts in the region. Complimentary meals, parking and childcare will be provided. Register for the event at the link below.

Register now

National Organization of Social Security Claimants' Representatives

NOSSCRThe mission of the National Organization of Social Security Claimants' Representatives (NOSSCR) is to advocate for improvements in Social Security disability programs and to ensure that individuals with disabilities applying for Social Security Disability and SSI benefits have access to highly qualified representation and receive fair decisions. NOSSCR is a specialized bar association of over 4,000 attorneys and other advocates. It has been a pioneer in legal continuing education and public policy advocacy since 1979. NOSSCR members represent claimants through the adjudication process, advocating for the income rights of people with disabilities. 

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FDA Unveils Plan to Eliminate Orphan Designation Backlog

FDAThe U.S. Food and Drug Administration unveiled a strategic plan on June 29, 2017, to eliminate the agency’s existing orphan designation request backlog and ensure continued timely response to all new requests for designation with firm deadlines. The agency’s Orphan Drug Modernization Plan comes a week after FDA Commissioner Scott Gottlieb committed to eliminating the backlog within 90 days and responding to all new requests for designation within 90 days of receipt during his testimony before a Senate subcommittee.

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September 15 Deadline for Researchers to Submit Grant Applications

lab researcher imageThe foundation’s Research Grant Funding Program has earned a unique place in the field of scleroderma research. It is respected by medical researchers and by government health agencies such as National Institutes of Health (NIH) and National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS). The grant program is administered by the Scleroderma Foundation's board of directors and staff, and is guided by the foundation's Peer Research Review Committee. This committee, composed of scleroderma medical experts from around the world, helps determine which proposals will be funded each year by reading, critiquing, and ranking all applications. 

All grant application deadlines are September 15 by 5 p.m. Eastern. Applications MUST be received in the Scleroderma Foundation office by the deadline. Postmarks are NOT recognized as meeting the deadline. 

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Matching Gift Program - Maximize Your Impact

Dollar BillThousands of companies across the United States match their employees’ annual gifts to nonprofit organizations. Find out if your company offers matching gifts by using our online search tool, or contact your human resources department. 

Give today

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Disclaimer: The Scleroderma Foundation in no way endorses any drugs, treatments, clinical trials, or studies reported in the eLetter. Information is provided to keep the readers informed. Because the manifestations and severity of scleroderma vary among individuals, personalized medical management is essential. Therefore, it is strongly recommended that all drugs and treatments be discussed with the reader’s physician(s) for proper evaluation and treatment.

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