The CLASS Act and Caregiver Village
The White House and the US Department of Health and Human Services pulled the plug on the Community Living Assistance Services and Supports Act, known as the “CLASS Act”. // Caregiver Village offers a creative and fun way to support caregivers.
Children's Rare Disease Network Partners With Medpedia.com To Create Rarespace
Online Knowledge Share Platform to Provide Valuable Information to Rare Disease Community Dana Point, Calif. (June 29, 2010) – Every parent needs a supportive, collaborative network full of information where medical professionals, researchers, patients, parents, advocates and the general public share knowledge about the rare childhood diseases that affect 22.5 million American families. RareSpace is [...]
Are vacations allowed when you've got a sick kid?
Prepare to be shocked, or at least to mildly “tsk tsk.” For almost three years time, my husband and I did not leave the kids and go on a grown-ups only vacation. All that changed last weekend, when we left the kids for almost 72 whole hours. [This almost three years lag violates all of [...]
Searching for a Cure – Patient Perspective Podcast #1
In this first in a series of podcasts focused on rare disease patient advocates, we speak to Debra Miller, president and founder of Cure Duchenne. When Miller’s five-year-old son was diagnosed with Duchenne Muscular Dystrophy, she faced grim news. The progressive muscle loss caused by the disease typically leaves these children wheelchair-bound by age 10 [...]
Collaboration is key in rare disease research!
KTVU-TV 2, the leading evening news in the San Francisco Bay Area, today reported on Addi and Cassi Hempel, identical twins affected by a rare disease called Niemann-Pick Type C (NPC). NPC is fatal and degenerative cholesterol disease that is often called the “childhood Alzheimer’s.” What is most interesting about this story is that Dr. [...]
A Tax-Free Savings Plan For Disabilities – ABLE Act Update
Legislation in Congress seeks to allow the disabled and their families to create tax-exempt savings accounts for future care-related expenses. Recently introduced legislation in Congress proposes to create tax-exempt savings accounts to care for people with disabilities, similar to Individual Retirement Accounts (IRAs) and 529 college savings plans. The ABLE—Achieving a Better Life Experience—Act would [...]