Swine Influenza (Flu) Update
Two Registries On Hand at National Conference
Linking Candidates with Disabilities to SSA Job
ACC: Pulmonary Hypertension Consensus Document Released
Those Inexplicable Instructions!
Are you a Woman of Worth?
The Many Shades of Lupus
Fearless Caregiver Conference
Scleroderma Message Board Is Moving to Inspire.com
Upcoming Events
2009 National Patient Education Conference Scholarships
Are Available
Photo of the Week
Stepping Out Walks
Commemorative Stamp for Scleroderma
2009 National Patient Education Conference
Scholarships Are Available.more... |
Photo of the Week
On Thursday, March 25th Executive Director Laura Dyas, Nancy Adams, Judy Nichols, Veronica Greason, Linda Miller and Effie Blackman all meet with Ryan Tarrant, the Director of External Affairs for Congressman Dave Camp, (R-4) Midland. The purpose of the meeting was to discuss the upcoming Scleroderma Research and Awareness Bill that will be introduced into Congress by Congresswomen Lois Capps in the near future.
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Stepping Out to Cure Scleroderma Walks Gearing Up
Find a walk near you! |
Commemorative Stamp for Scleroderma
The Scleroderma Foundation
is pursuing a commemorative stamp for scleroderma.
We
need your help! |
2009 Communications Sponsor |
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The human swine flu outbreak continues to grow in the United States and internationally. Today, CDC reports additional cases of confirmed swine influenza and a number of hospitalizations of swine flu patients. Internationally, the situation is more serious too, with additional countries reporting confirmed cases of swine flu. |
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Heidi Jacobe, M.D. |
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Marilyn Perry |
Two Registries Looking for Patients at National Conference
Morphea Registry and DNA Repository
Dr. Heidi Jacobe and her staff will be enrolling patients. They welcome any patient with morphea 3 years old or older to enroll in this study. The purpose of this study is to create a national registry of people with morphea in order to answer questions associated with the disease: its association to other diseases, and the genetics behind the disease.
Scleroderma Family Registry and DNA Repository
On behalf of Maureen Mayes M.D., MPH, Marilyn Perry and her staff invite you to register and become members of the Scleroderma Family Registry & DNA Repository. This NIH/NIAMS (National Institutes of Health/National Institute for Arthritis, Musculoskeletal and Skin Diseases) financed national resource has to date enrolled over 1,300 scleroderma patients. |
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 The Social Security Administration has recently received funding to hire a significant number of employees throughout the country. This hiring initiative offers a unique opportunity for individuals with disabilities who may want to get a job with SSA. These jobs will be at various skill levels including a number of entry-level positions.
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 Although recent advances have led to increased recognition of new therapies for pulmonary hypertension, this complex and rare disorder has been inadequately explored, according to an Expert Consensus Document published online March 30 in the "Journal of the American College of Cardiology" to coincide with the American College of Cardiology's 58th Annual Scientific Sessions held March 29–31 in Orlando, Fla.
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By Barry S. Tepperman, M.D., M.B.A., F.A.C.R.
It happens to every caregiver. You're at the doctor's with your loved one. You and your loved one are both feeling well, and your loved one is looking forward to a vacation away-with some strenuous physical activity. Just to check, you tell the doctor your plans: you're off, together, to the Great Smoky Mountains for some hiking. A concerned frown comes over the doctor's face, and your doctor says, "I really don't think you should do that..." The voice trails off, and—if there's an explanation offered—you don't quite understand it, or it's lost in the immediate impact of the doctor's statement. |
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 If you have lupus, you probably have many questions. Lupus isn’t a simple disease with an easy answer. You can’t take a pill and make it go away. The people you live with and work with may have trouble understanding that you’re sick. Lupus doesn’t have a clear set of signs that people can see. You may know that something’s wrong, even though it may take a while to be diagnosed.
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Stressed about caregiving? Join us at a Fearless Caregiver Conference...coming to a town near YOU!
Enjoy an entire day with caregiving experts.
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Ft. Lauderdale, Florida
Thursday June 18, 2009
8:30 a.m.–2:30 p.m.
Signature Grand
6900 State Road 84
Davie, FL 33317
REGISTER |
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Chicago, IL
Wednesday May 27, 2009
8:30 a.m.–2:30 p.m.
Holiday Inn Chicago
North Shore
Skokie Banquet and Conference Center
5300 W. Touhy Avenue
Skokie, IL 60077
REGISTER
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Scleroderma Message Board Is Moving to Inspire.com
 In an effort to help improve community communications, we will begin using www.inspire.com on May 4, 2009, as our new message board. Inspire.com offers additional features and is more user friendly compared to the format of this previous message board. To join, please go to www.inspire.com and create a login and password. We will keep our old message board up through the end of May in order to allow people to copy and paste their posts to Inspire's message board. On May 4, there will be an announcement on our home page with the Web address.
This board is public by default. You can choose to make posts available to Inspire members only. Just login and click on My Settings to make the changes.
Thank you for your understanding and assistance!
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Nominate a Woman Of Worth and L'Oréal Paris will make a $5,000 donation to her most cherished charitable cause. LOreal will make an additional $5,000 donation in the name of each winner to support The Ovarian Cancer Research Fund (OCRF), L'Oréal Paris primary philanthropy. To date, L'Oréal has raised over $18 million on behalf of OCRF to honor their commitment to women. |
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