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eLetter #756 | March 30, 2018  
 NPR Story Online Communities

How Social Media Can Reveal Overlooked Drug Reactions

An NPR story by Menaka Wilhelm (3/23/18) about online health communities, like Inspire.com, reports on the added value these communities have in revealing side effects of medication that are not necessarily reported in pharmaceutical documentation.

read more

 2018 Conference Save the Date 180x270

Are You Going to Philly?

The National Patient Education Conference is a remarkable experience where people with scleroderma can connect with each other and learn from one another and from scleroderma experts.  

REGISTER ONLINE for the 2018 National Patient Education Conference, July 27-29, in Philadelphia:  scleroderma.org/conference.

If you prefer to mail your registration, download a PDF registration form and send in a hard copy

Hotel information is also online.  To receive the group room rate of $169, call Loews Philadelphia Hotel, (888) 575-6397, and mention the Scleroderma Foundation conference, or click here to book your room via Loews' online system.

 March 2018 Lightbox Image

Nothing can Replace a Face to Face Connection

Individuals affected by a rare disease, like scleroderma, need to connect with others like them. It is essential and it is life altering.  These powerful connections happen at the Scleroderma Foundation's National Patient Education Conference. 

People with scleroderma, caregivers, researchers, and medical professionals gather in one place and relate to each other.  Getting people to the conference can be a challenge, which is where you come in. 

We depend on generous donors to underwrite the scholarship fund to help people who have scleroderma attend conference for the first time.

Donate today to conference scholarship fund

 PAH Voice Reprint Fall 2017 Med-IQ Gilead

PAH in Systemic Sclerosis
Learn more in a special article from Scleroderma Voice

Pulmonary arterial hypertension (PAH) is a serious but rare condition that develops in approximately 8 percent  to 12 percent of patients with systemic sclerosis (SSc).  Learn more about risk factors, screening tests, and treatment options for PAH in a special article that appeared in the Fall 2017 edition of Scleroderma Voice magazine, the member magazine of the Scleroderma Foundation.  The article includes a questionnaire for you to complete and share with your physician.

read about PAH in SSc

 Safe Needle Disposal

SafeNeedleDisposal.org

A new online resource, SafeNeedleDisposal.org is the one-stop shop people need to learn how to dispose of sharps properly and safely, wherever they are. SafeNeedleDisposal.org offers easy-to-understand, actionable—and most importantly, local—information and free resources.

SafeNeedleDisposal.org

 Healthline NORD Stronger Scholarship

The Stronger Scholarship

Healthline, a consumer health information website, and NORD, the National Organization for Rare Disorders, team up to offer four scholarships of $5,000 each to assist and empower college students who are making an impact on rare and/or chronic diseases through research, patient advocacy, raising awareness, or community building. Application period is March 1 - May 1, 2018.

eligibility and application

 Stepping Out Inside  SF tile

Where are you Stepping Out to Cure Scleroderma This Year?

Where are you Stepping Out to Cure Scleroderma this year?

Find a Stepping Out to Cure Scleroderma Walk or 5K

 Southern California Basic Stationery

Support Groups of Southern California

Support groups enable individuals with scleroderma to connect and exchange information with others who face similar problems.  Groups also host expert speakers from time to time.  There are many Scleroderma Foundation-affiliated support groups around the country, although some geographic areas are less well represented.  Each week, we highlight support groups associated with a particular chapter.  The Southern California Chapter hosts 15 groups.

Support groups in Southern California

 
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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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