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CARES Foundation

In Recognition of Rare Disease Day 2017:
Congenital Adrenal Hyperplasia (CAH) – Fact vs. Fiction

Recently the condition known as congenital adrenal hyperplasia ...or CAH, has been misrepresented in the media thanks to the documentary “Gender Revolution: A Journey with Katie Couric,” which aired on National Geographic Channel. Roughly 300,000 people in America are afflicted with CAH, and about three percent of them have reported cases of genitalia that are not typically female in XX infants. However, this documentary provided misleading information by exclusively presenting CAH as an example of this condition, while also implying that anyone who has CAH has atypical genitalia. Today, in recognition of Rare Disease Day, CARES Foundation, the leading advocacy group supporting those affected with CAH and their loved ones, would like to set the record straight.

What CAH is:
CAH is an inherited endocrine condition occurring equally in both females AND males that places those affected at risk for life-threatening adrenal crisis events. Babies born with CAH have elevated levels of testosterone throughout gestation that decrease to normal levels with steroid treatment. CAH is a form of adrenal insufficiency that has no cure. Patients affected with the severe form of CAH will require life-saving medication for the rest of their lives.

What CAH isn’t:
CAH is not an intersex condition, nor is it the only condition that may cause a baby to be born with atypical genitalia. In addition, not all babies born with CAH experience this outcome.
What people should know:
The majority of babies born with CAH do not have atypical genitalia. However, families who have infant daughters born with atypical genitalia face a dilemma: opt for surgery to correct the issue during infancy or wait until their child is old enough to make this decision for herself. Families who opt for or against corrective surgery face potential criticism and backlash from those who share opposing views. When any source emphasizes this aspect in such a public way, it exploits those with CAH and worsens the situation for families who are already facing difficult circumstances and doing their best to make informed medical decisions for their children.
By solely focusing on the atypical genitalia aspect of the disorder, the viewing public has a one-sided view of a dangerous condition. What is of utmost importance to everyone with CAH is the need to educate patients, families and healthcare providers on how to properly treat patients with this life-threatening condition; there is a critical need to make changes to emergency response units to ensure they have protocols in place and emergency injectable hydrocortisone to treat patients in adrenal crisis. Those with CAH can face dire medical consequences if proper medication is not immediately available in times of physical stress.

The CARES Foundation’s spokespeople, Dr. Karen Lin Su and Dina Matos are happy to make themselves available to discuss CAH in greater detail and dispel any misperceptions. And in recognition of Rare Disease Day, the topic is timely. Please contact Dr. Su at medicaldirector@caresfoundation.org or Dina Matos at 866-227-2727 or dina@caresfoundation.org.

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Thank you to Dr. William Hait and Janssen Pharmaceuticals for hosting our Rare Disease Day Celebration and for everyone who facilitated and participated in this informative and important event for Rare Disease patients and advocates in New Jersey.

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Thank you to Congressman Leonard Lance for participating in Rare New Jersey's Rare Disease DayCelebration! He continues to be a vocal champion for rare disease patients. We are grateful for his support!

Thank you to Dr. William Hait and Janssen Pharmaceuticals for hosting today's event!

Looking forward to seeing everyone on Monday.

Join us at our RARE DISEASE DAY celebration!

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SAVE-THE-DATE

2016 RARE DISEASE DAY

Monday, February 22, 2016...
9:30 am to 1 pm
Jansen Pharmaceuticals
1000 Route 202 South
Raritan

Stay tuned for more information!

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Martin "The Pharma Bro" Shkreli hiked the price of a life-saving drug 5,500%. Congress needs to crack down on price gouging and pass the Prescription Drug Affordability Act of 2015.
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CARES Foundation has an opening for a director of finance and operations. Please email dina@caresfoundation.org if you know an interested candidate. thank you

Rare disease advocates meet with Congressman Leonard Lance about 21st Century Cures

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Save-the-Date: July 20, 2015
Rare Disease Legislative Advocates North-East Conference

Stay tuned for more details.........

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May 28, 2015
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TAMPA — Like most 2 1⁄2 year olds, Abby Langford loves to play, run, jump and skip, but it took the spunky little girl nearly a year more than her peers and 10 months of physical thera
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