Celebrate Rare Disease Day Feb. 28 - Stories from Patients

Scleroderma Foundation eLetter

eLetter #389

Greetings!

Why Should You Attend the
2011 National Conference?

This year's conference will feature workshops by the leading experts and health care professionals in the scleroderma community. Meet new friends and connect with old ones. Celebrate with other scleroderma patients and their families in a mutually-supportive environment. Learn more about the conference today!

Registration now is open for the National Patient Education Conference July 8-10, 2011, in San Francisco. Not sure if you should attend? View this video slideshow from the 2010 conference that was held in Boston. For many attendees, it was the opportunity of a lifetime.

Stories From Patients with Rare Diseases

A key challenge for patients with rare diseases is getting an accurate and timely diagnosis. "It's frustrating because I'm just learning as I go," is how one 34-year-old man with tuberous sclerosis describes living with his rare disease.

In recognition of International Rare Disease Day 2011 on Monday, Feb. 28, Inspire has compiled first-person narratives in a new report, The Road to Diagnosis: Stories from Patients with Rare Diseases.

The compilation was put together from a selection of Inspire's 170,000 members of its online patient support communities. View stories from patients with scleroderma, sarcoidosis, tuberous sclerosis and more. Download a PDF file of all the stories from Inspire.

Understanding the Placebo Effect to Optimize Your Health

A better understanding of the brain mechanisms behind the placebo effect may help clinicians maximize people's health beyond the power of positive thinking, according to an article published in the journal Brain.

Specific placebo studies were addressed with a focus on particular disorders including pain, Parkinson's disease, multiple sclerosis, epilepsy, and aging/dementia.

Digital Ulcers Linked to More Severe Systemic Sclerosis

Digital ulcers are associated with more severe systemic sclerosis (SSc) disease, including skin and lung involvement, but not with pulmonary arterial hypertension (PAH) or scleroderma renal crisis (SRC), according to research published in the January issue of Arthritis Care & Research.

Pre-Existing Condition Insurance Plan Program Changes

The Pre-Existing Condition Insurance Plan (PCIP) was created under the Affordable Care Act. The federally-administered PCIP is offered via the U.S. Department of Health and Human Services in 23 states and the District of Columbia.

As of January 2011, PCIP enrollees in the federally-administered plan have a choice of three plan options - the Standard Plan, the Extended Plan, and the HSA Plan.