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| In This Issue |
February 2010 |
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Rare Disease Day Discovery Health Channel, Disease Detectives The Experience of Uncertainty Study
Social Networking
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Rare Disease Day, February 28th 2010 It seems those who continue to be undiagnosed for years may fall into a category of rarer than rare. There is a chance that they may have a rare disease that has not been identified yet or they may have an identified rare disease but can't find the right medical professional to diagnosis it. This is why Rare Disease Day is important to Syndromes Without A Name. We need to bring awareness to the rare diseases so those who have them may get a diagnosis in a quicker fashion. The more awareness brought to rare diseases, the greater the opportunities to increase disease detection. More than half the people with rare diseases are children. See what you can do to bring awareness to children with rare diseases and in may go a long way to reaching a child who is undiagnosed. Raise Your Hand to fight rare diseases is a campaign where Lundbeck Inc. will donate $1 to NORD's general research fund, click on "Make a Difference" For more information about Rare Disease Day click here. Discovery Health Channel, Disease Detectives On Rare Disease Day, February 28th, Discovery Health Channel will premiere a hour long special. The special, Disease Detectives, will follow Dr. Gahl and his team as the try to solve real-life mysteries. Be sure to tune into Discovery Health Channel on February 28th at 8:00pm ET/PT. Read the full story relating to this special here. Harmonizing with Humanity Harmonizing with Humanity is a non profit organization that recognizes music as a powerful tool for changing the world. They bring together independent artist to create positive music that inspires people to their core. At the same time the music is designed to support important causes. Randy Grossman from Harmonizing With Humanity (HWH), is the father of two sons with special needs. That experience likely has a lot to do with the first album produced bye HWH. "The Life That's Chosen Me", will certainly allow you to feel the heart of this organization. Grammy nominated songwriter and artist Karen Taylor-Good wrote the song "The Life That's Chosen Me" after talking to Randy about his children who have Autism. HWH is also helping non profits by allowing them to share and sell their music and then receiving a portion of the proceeds. To listen or buy the songs go here. The Global Genes Project is a Children's Rare Disease Campaign that is a grassroots effort. The goal of the campaign is to increase awareness for the prevalence of rare diseases and help those affected by them. While each disease may be rare when considered by itself, together they negatively impact the lives of millions of children and adults. The more we learn abut rare diseases, especially those that strike children, the more we can help the millions affected by them. See how you can help here. The Experience of Uncertainty Study This study will continue until it reaches a certain number of participants. If you haven't yet been able to participate in this study, please do take some time to get involved. The National Human Genome Research Institute at the National Institutes of Health (NIH) is sponsoring a study that seeks to learn more about how parents of children with an undiagnosed medical condition think and feel about their child's condition. We hope that this knowledge will improve the health care and counseling for these parents. Men and women who are 18 years or older and have at least one child with a medical condition that has remained undiagnosed for more than 2 years are needed to take part in this study. Participation involves one survey that takes about 45 minutes to finish. The survey can be taken online or a paper copy can be mailed to you. For additional information about this study, you may review the Notice to Participants disclosure.
When you visit
the Study Notice, you will see a link to the actual survey and the
password to enter the survey. Handbook - Genetic Home Reference shares a handbook titled "Help Me Understand Genetics". Partnering with your doctor - Regional 4 Genetic offers this guide to partnering with your doctor, a medical home approach. UNDIAGNOSED - Esther's first documentary was done about her daughter who is undiagnosed. The Gift - Jackson entered the Laws of Life Essay Contest with an essay about his sister who had no diagnosis for her condition. CareCalendar - CareCalendar is a web based system to organize meals and other help for families during a time of illness or life changing event, such as the birth of a baby or death of a family member. Of We Go - Books written by a mom of a children without a diagnosis. The books are proven to help children with special needs in different areas of learning. This story is about Brooke a 12 year old who still looks like an infant. This story was featured on Dateline and has a video of the program. read more This is a article is about a family's journey to a diagnosis of a rare disease for their young child. The rare disease had already taken the life their other child. read more You may be receiving this
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