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| eLetter #726 | September 1, 2017 |
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Labor Day, September 4
 The
Scleroderma Foundation National Office will be closed on Monday, September 4, in observance of
Labor Day.
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How to Prepare for an Emergency or Disaster When You Have Lung Disease or a Sleep Disorder
 This 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.
Read more
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Healthcare Ready - Disaster Preparedness Tool for Medications & More
 Healthcare
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.
Read more
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PHA On the Road, Pittsburgh, Penn
Saturday, Sept. 9, 2017; 8 .m. to 4:30 p.m.
 Are
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
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National Organization of Social Security Claimants' Representatives
 The
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.
Learn more
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FDA Unveils Plan to Eliminate Orphan Designation Backlog
 The
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.
Read more
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September 15 Deadline for Researchers to Submit Grant Applications
 The
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.
Learn more
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Matching Gift Program - Maximize Your Impact
 Thousands
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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