New Resource for Disabled College Students

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A new tool for college students with disabilities is now online. The We Connect Now website (http://weconnectnow.wordpress.com/) was created by college student, Gabriela McCall Delgado, using a grant she received from YP4.    The website was developed in an effort to connect and integrate college students with disabilities […]

A Never-Ending Battle: ALD Causes Many Setbacks For This Mother Of Two

As an X-linked genetic disorder, Adrenoleukodystrophy is more likely to occur in men.

In 2004, I was told by my biological mother that my son would have a 50/50 chance of being diagnosed with Adrenoleukodystrophy. I asked the doctors to test me, but they wanted to wait because I was considered high risk.  My son was born November 15th, 2004. […]

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 […]

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 […]

Searching for a Cure For Duchenne – Patient Perspective Podcast #1

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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 […]

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.”  […]

A Tax-Free Savings Plan For Disabilities – ABLE Act Update

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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 […]