Rare Diseases

To Be Rare Or to Be Neglected: For a Disease, That Is the Question

Dr Layla McCay | Posted 05.01.2012

Read More: Neglected-Tropical-Diseases, Global Health, Infectious Diseases, Rare Diseases, Health, Health Care, Rare Disease Day, Ntds, Neglected Tropical Diseases, Neglected Diseases, Health News, Healthy Living News
Dr Layla McCay

In terms of the science, it seems that "rare diseases" are more likely to be neglected than so-called "neglected tropical diseases." Perhaps in terms of NTDs, it's not the diseases but the people who have been neglected?

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Finding a Home for Orphan Diseases

Daniel P. Malito | Posted 03.24.2012

Read More: Orphan Diseases, Rare Genomics Institute, Disease, Rare Diseases, New Research, Healthy Living News
Daniel P. Malito

Recently, I spoke with someone who opened my eyes to an entire class of diseases for which there are few to no medications available, and almost no plans to create any remedies in the near future. These ailments are called "rare" or "orphan" diseases.

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Anonymous Donor Grants Dying Girl's Wish To Be Buried Next To Mother

The Huffington Post | Laura Hibbard | Posted 11.30.2011

Read More: Woman Gets Last Wish, Charity, Machado Joseph?S Disease, Rare Diseases, Inspirational People, Inspirational News, Donations, Last Wish, Impact, Video, Impact News

Megan Parson's last wish was to be buried next to her mother, who died several years from Machado Joseph's Disease. Megan, who died weeks ago, also...

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Why Patient Care Needs To Get Personal

David Katz, M.D. | Posted 10.31.2011

Read More: Healthy Living Body, Rare Disease Care, Rare Diseases, Population-Based Care, Health Care, Patient Anomalies, Individualized Care, Personalized Patient Care, Healthy Living News
David Katz, M.D.

Evidence-based medicine, in other words, is population-based medicine. The care of any individual patient is based on the experiences of patients who have come before. And while to some extent that is unavoidable, it is also a great peril.

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A Huge Push For More More Drugs To Treat Rare -- But Deadly -- DIseases

AP | By LAURAN NEERGAARD | Posted 06.26.2011

Read More: Personal Health, Niemann-Pick Type C Treatment, Rare Diseases, Niemann-Pick Type C Drug, Rare Disease Treatment, Rare Diseases Research Consortium, Rare Disease Drugs, Niemann-Pick Type C, Home News

WASHINGTON -- Every other week, 7-year-old twins Addison and Cassidy Hempel have an experimental medicine injected into their spines in hopes of battl...

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Extending Rare Disease Awareness Beyond Just One Day

John J. Castellani | Posted 05.25.2011

Read More: Biotech, Research, Personal Health, Pharmaceuticals, Rare Diseases, Rare Disease Day, Home News
John J. Castellani

We don't yet have the answers. But we hope that awareness of rare diseases extends beyond a single day, drawing attention not just to the diseases, but to the challenges.

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Gaming For Good: Funding Cancer Research By Reselling Video Games

Calandra Cruickshank | Posted 05.25.2011

Read More: Cancer, Donations, Video Games, Jim Carol, Leukemia, Computer Games, Rare Diseases, Donate Games, Seattle Children's Hospital Foundation, Video Game Developer, Impact News
Calandra Cruickshank

Last year, major video game publishing companies donated vast quantities of games and game systems to DonateGames to help raise funds for children with rare diseases.

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Are You Aware? 21 Rare Diseases

Posted 05.25.2011

Read More: Rare Diseases Day, Personal Health, Rare Diseases, Slidepollajax, Slideshow, Rare Diseases Day 2011, National Rare Disease Day 2011, Rare Disease Day, Rare Diseases List, Rare Diesease Day Dieseases Featured, National Rare Disease Day, Rare Disease, Strange Diseases, Home News

February 28 is Rare Disease Day -- a day organized by EURODIS, the European Organisation for Rare Diseases, as well as like alliances across the globe...

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Is It Time We Paid More Attention To Rare Diseases?

TIME | Posted 11.17.2011

Read More: Diseases Rare, Rare Diseases, Rare Disease Research, Uncommon Diseases, Health, Rare Disease, Healthy Living News

Treating these diseases puts a burden on health services and living with them can destroy families--losing a loved one is a tragedy, no matter if it's...

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Top 10 Medical Research Trends To Watch In 2010

Margaret Anderson | Posted 11.17.2011

Read More: Rare Diseases, Health Care Reform, Cures, Nih, Medical Research, Medical Innovation, Fda, Health, Healthy Living News
Margaret Anderson

Here are the top 10 medical research trends to watch for in 2010.

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