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Genetic Disorders

How New Genetic Technologies Are Reshaping Pregnancy And Parenting

The Huffington Post | Carolyn Gregoire | Posted 02.20.2017 | Healthy Living

As the nascent field of genetic testing advances, expectant parents face a dizzying array of new and difficult questions. Would you want to know if yo...

CRISPR Will Never Be Good Enough To Improve People

Stuart A. Newman | Posted 02.22.2017 | Healthy Living
Stuart A. Newman

The CRISPR/Cas9 (CRISPR) technique has been used to modify genes in animals, plants and fungi, organisms different from and more complex than the bact...

New Genetic Discovery Explains Why Some Women Suffer Extreme PMS

The Huffington Post | Sarah Digiulio | Posted 02.17.2017 | Healthy Living

Most women are all too familiar with the I-just-want-to-go-home-and-put-on-my-sweatpants feeling that comes with their periods, but for some, symptoms...

U.S. Scientists Urge 'Serious Consideration' Of Gene Editing In Human Embryos

Reuters | Anna Almendrala | Posted 02.15.2017 | Healthy Living

CHICAGO (Reuters) - Powerful gene editing tools may one day be used on human embryos, eggs and sperm to remove genes that cause inherited diseases, ac...

Scientists Discover 83 Genetic Mutations That Help Determine Your Height

The Huffington Post | Carolyn Gregoire | Posted 02.06.2017 | Healthy Living

Ever wonder how much of your height you inherited from your parents? A large-scale genetic study published recently in the journal Nature is helping ...

Exercise May Be As Valuable As Good Genes In Lowering Dementia Risk

The Huffington Post | Sarah Digiulio | Posted 02.01.2017 | Healthy Living

Everyone knows fitness is important, but it can be hard to measure exactly what role it plays in health. According to one new study, exercise may be a...

New Genetic Discovery May Explain Why Some People With Crohn's Disease Suffer More

The Huffington Post | Sarah Digiulio | Posted 02.21.2017 | Healthy Living

More than half a million people in the U.S. suffer from Crohn’s disease, according to recent estimates, but their experiences with the chronic illne...

Brave New World: UK Is First To Legalize Three-Parent Babies

The Huffington Post | Mary S Papenfuss | Posted 12.16.2016 | Science

It’s now legal in Britain to create a three-parent baby using healthy DNA from a donor to fix debilitating genetic problems. U.K. fertility clinic r...

Friends and Family Make it Happen

Alexis Buryk | Posted 09.06.2016 | Impact
Alexis Buryk

I have people in my life who make it amazing, both family and friends. And there is an African proverb that says, "if you want to go fast, go alone, i...

Raising A Daughter With Down Syndrome Makes Me Dream Of A More Inclusive Society

Rémy Bellet | Posted 06.16.2016 | Parents
Rémy Bellet

It will not be an easy task to change people's views of all the little Louises of the world, or of anyone who's different and wishes that their difference wouldn't define their life.

Can You Take One Small Step?

Siobhan Kukolic | Posted 05.19.2016 | Impact
Siobhan Kukolic

For the last ten years, my friends Keegan and Tanya have been fighting tirelessly to raise funds for and awareness about Prader-Willi Syndrome. One of the many issues that goes along with this disorder is never-ending hunger.

Non-Invasive Prenatal Testing (NIPT): A False Positive Story

Mischa Livingstone | Posted 04.15.2016 | Parents
Mischa Livingstone

Throughout this ordeal we learned of a whole new type of sorrow (who knew there were so many different types of pain?), but also a whole new type of appreciation and love for one another, and for the child my wife is busily building.

New Gene Therapy Lights up Vision

Medical Discovery News | Posted 03.15.2016 | Science
Medical Discovery News

The treatment may be approved this year, but many people won't be able to afford the $100,000 cost. Still, we're excited this gene therapy works and this approach could benefit other genetic vision disorders.

Planned Parenthood Made Our Family Possible, And We Aren't Even Patients

Matt Uffalussy | Posted 12.03.2016 | Politics
Matt Uffalussy

My wife and I were not patients at Planned Parenthood while we sought to build our family. But it is the kind of services that Planned Parenthood provides -- and legislation that Planned Parenthood helps lobby for  -- that allowed us to have our child safely and healthy.

How My Cousin With Rett Syndrome Found Her Voice and Made a Difference

Berni Barta | Posted 10.27.2016 | Impact
Berni Barta

My cousin is a leader, championing the cause to find a cure for Rett Syndrome. She is a role model, inspiring girls everywhere with her wisdom and perseverance. She is, to put it simply, a butterfly.

My Children Have a Rare Disease and I Need to Take Action!

Alexis Buryk | Posted 06.02.2016 | Impact
Alexis Buryk

It really has been only six months since I found out that my 26-year-old fraternal twin daughters, Katie and Allie, have Late Onset Tay-Sachs (LOTS). ...

The Cold Reality That's Set In After Last Year's Ice Bucket Challenge

Dawn Q Landau | Posted 06.13.2015 | Fifty
Dawn Q Landau

While ALS has certainly gotten so much more focus than it would have otherwise, now that all the ice buckets from all the ice-bucket challenges have been emptied, those on the front line are still suffering, with too little funding and often with little company.

February 28, 2015 Is Rare Disease Day

Alexis Buryk | Posted 04.29.2015 | Impact
Alexis Buryk

And how do I know that? My 26-year-old fraternal twin daughters were diagnosed with Late Onset Tay-Sachs this past November.

The Day We Were Told Not To Have More Children

Heather Lens | Posted 12.16.2014 | Parents
Heather Lens

Irresponsible. What did he mean? He didn't say that we were physically unable to have kids. He said that if we chose to, we would be irresponsible.

How My Son Showed Me A Depth I Didn't Know I Had

Posted 03.13.2015 | OWN

As a young man, writer Hamilton Cain loved his freewheeling, fun-filled life. But when the birth of his first son brought unimagined challenges, he fo...

Just One of the Girls

Wendy Ferguson | Posted 08.26.2014 | Parents
Wendy Ferguson

For all of Abby's 9 years, I admit that I have been a very protective parent. Even before we knew she had special needs, let alone a terminal illness, I found myself trying to protect her from actual and perceived dangers.

My Greatest Sorrow Is My Greatest Joy

Wendy Ferguson | Posted 08.02.2014 | Parents
Wendy Ferguson

She's dying. My 9-year-old daughter is dying. Today I can say it without crying, but not necessarily tomorrow.

I Made This Baby

Suzanne Perryman | Posted 04.30.2014 | Parents
Suzanne Perryman

We never planned to have more kids, but we were so happy as a family, we never really planned not to.

My Experience With Rett Syndrome

Gaby Valner | Posted 02.05.2014 | Healthy Living
Gaby Valner

Although intellectually and conversationally the doors have been unlocked, there are still so many things I struggle with. Even typing this speech has taken days to get this far and will take several days more to complete, typing literally one letter at a time with my right pointer finger.

How Much Do You Want to Know About Your Unborn Child's DNA?

Kyle Koeppel | Posted 10.08.2013 | Healthy Living
Kyle Koeppel

I personally would not select out or abort a fetus because it tested positive for Lynch Syndrome. I find it ironic that a living person has to wait until the age of 18 to have genetic testing, but an unborn child's parents can determine whether or not the child has Lynch Syndrome before birth.