Blog

New Treatment Available for Adrenal Insufficient Patients in Europe

Diurnal appoints Clinigen to launch a European Patient Access program for Infacort® and Chronocort® Infrastructure and supply chain now in place to provide Infacort® and Chronocort® as unlicensed medicines to patients on a Named Patient basis.

SEE PRESS RELEASE HERE.

 

By |March 16th, 2017|News|0 Comments

NATGeo – CALL TO ACTION Continues!

The “official” call-to-action dates have passed but we urge you to continue to speak up about your rights as parents of CAH patients. Make phone calls, send emails and mail letters. Make sure your voice is heard! Here is the information posted about the February CALL-TO-ACTION.

 

SPEAK UP!!!

Call the numbers* below during the following times:

FRIDAY, […]

By |March 1st, 2017|Advocacy, News|0 Comments

Research Opportunity!

Seeking women with CAH or parents of daughters with CAH who received care from Dr. Richard Rink at Riley Hospital for Children in Indianapolis.

Riley’s CAH Comprehensive Care Center is doing exciting online research for and with women who have CAH, girls with CAH, and their parents. We hope that you can share your thoughts […]

By |February 24th, 2017|News|Comments Off on Research Opportunity!

WORLD RARE DISEASE DAY – February 28, 2017

World RARE Disease Day is an annual observance held on the last day of February to raise awareness for rare diseases and improve access to treatments and medical representation for individuals with rare diseases and their families.

This 10th annual RARE Disease Day is slated for Tuesday, February 28, 2017.

CARES hopes that you will do your […]

By |February 24th, 2017|News|Comments Off on WORLD RARE DISEASE DAY – February 28, 2017

LET’S POLAR FOR ZOE! First Family Fundraiser of 2017!

Be one of many brave souls to plunge in to the freezing cold waters off of Long Island New York for a toddler named Zoe who has CAH!

“Warrior Momma”, Patricia Rodriguez is hosting a family fundraiser in her daughter Zoe’s name to benefit CARES and raise awareness of CAH on Sunday, February 5th. This […]

By |January 26th, 2017|Calendar of Events, Events, Families, Fundraising, News|Comments Off on LET’S POLAR FOR ZOE! First Family Fundraiser of 2017!

SAVE THE DATES!

The dates for our Everyone CARES Gala and CAH Education Conference have been set! Please mark your calendars and let us know if you’re interesting in supporting these events: sponsors, donations, volunteers, and other resources are always welcome! Please email Dina to tell us you’re interested in supporting these events or if you need more […]

By |January 5th, 2017|News|Comments Off on SAVE THE DATES!

2017 SUPPORT GROUP MEETINGS!

MARK YOU CALENDARS so that you don’t miss our informative, helpful and insightful conference call support group meetings.

THURSDAY, JANUARY 12
PARENTS OF NEWBORNS/INFANTS/TODDLERS
9:00 pm (EST)

WEDNESDAY, JANUARY 25
CAH WOMEN – 8:30 pm

FOR CALIFORNIA PARENTS!
SATURDAY, JANUARY 28
IN-PERSON SUPPORT GROUP MEETING HOSTED BY CARES’ COMPREHENSIVE CARE CENTER FOR CAH at
CHILDREN’S HOSPITAL OF LOS ANGELES for
PARENTS OF INFANTS & […]

By |January 4th, 2017|News|Comments Off on 2017 SUPPORT GROUP MEETINGS!