Talking to Children About Serious and Terminal Medical Diagnosis – Strategies For Communication

Vanessa Lemminger Discusses Dealing with a Terminal Diagnosis

Dealing with a serious diagnosis, whether it be your own or that of a family member, is a difficult and complex process.  Having to break the news of the diagnosis to your children is even harder.  Most parents battle between preventing unnecessary anxiety and stress […]

Batten Disease Awareness Weekend Bringing Hope for Children with a Fatal Disease—and No Cure in Sight

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June 1, 2011 (Reynoldsburg, OH) – Batten Disease Support and Research Association (BDSRA) is holding its 3rd annual Batten Disease Awareness Weekend, June 3-5, 2011 to bring recognition to a rare but devastating disease.Batten disease is a genetic neurological disease that brings an early death […]

SHIRE PRESENTS – 'ACES SCHOLARSHIP PROGRAM' – Register Today!

Shire is proud to introduce the Shire ACES Scholarship Program! This program recognizes academic achievement in the lysosomal storage disease (LSD) community. High-school graduates or GED credential recipients who have been diagnosed with an LSD are eligible to apply. A $5000 scholarship will awarded for […]

Family Shares Story of Living with a Rare Condition

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At eight years of age, Tommy Glatzmayer is two years younger than his sister Melanie, but he has always been protective of her. Melanie was born with a condition that sets her apart from other kids her age. Born with Cornelia de Lange Syndrome (CdLS), […]

Judgement – Do Not Defend Yourself When It Comes To Your Child’s Rare Disease

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Parents of special needs children are continually scrutinized and judged by others. Those who have not been affected by a child with a rare disease have no idea the difficulties our children and we as parents face on a constant basis. I remember when Ian […]

Families look to orphan drug development at University of Minnesota

Orphan diseases affect 25 million people in the United States. By Taylor Selcke, MN Daily.com For Michael Zimanske, years of holidays and birthdays spent in hospitals began after a routine kindergarten check-up. The doctor said he wasn’t growing like a normal 5-year-old, and full body […]

NIH Coalition of Patient Advocacy Groups Convene – Global Genes Represented

Last week the NIH Office of Rare Diseases Research hosted it’s annual Rare Disease Clinical Research Network meeting.  As a prelude to this sold out event, RARE Project was asked to speak about ‘Grassroots Activities in Rare Diseases’ of which Global Genes Project/Fund was presented, […]