When

DAY: THURSDAY

DATE: JANUARY 27, 2022

TIME:  8:00 PM EST

Where

This is an online event.  A Zoom link will be provided via email upon registration.

Contact

Odaly Roche, Administrative Assistant Odaly@caresfoundation.org

Event Sponsors

Are you living with or caring for someone with adrenal insufficiency (such as CAH, Addison's disease, and PCOS)?

You're invited to a special online event...

Webinar: Care Models; Advocating for Yourself 

Please join hosts Dina Matos, CARES Foundation Executive Director, and Dawn Laney, CGC, Associate Professor of Medicine Emory University and Emory Genetic Clinical Trials Center and Co-Founder of ThinkGenetic, as they lead an important conversation entitled CARE MODELS & ADVOCATING for YOURSELF.

Care Models were designed and developed as a response to communication challenges that can limit healthcare decision making. In response to this growing issue, Care Models (also known as patient-centered medical homes or PCMHs) have delivered a much needed and more improved patient-centric focus. At the heart of the Care Model is better patient care followed by better health outcomes. 

In this webinar you can expect to learn: 

  • What Care Models are and why you should "care" about them?
  • How to build a care team
  • How to become a better advocate for yourself or loved one

Who should attend? Those living with or caring for someone with adrenal insufficiency are encouraged to attend.

DAY: THURSDAY

DATE: JANUARY 27, 2022

TIME:  8:00 PM EST

If you would like to participate, please RSVP by clicking the Register Now! link below. The webinar link will be provided. 

There is no charge to attend this informational webinar but registration is encouraged to reserve your spot.

About Our Speakers

Dina Matos - Executive Director - CARES Foundation

Dina Matos joined CARES Foundation, a not-for-profit organization dedicated to serving the needs of individuals affected by congenital adrenal hyperplasia (CAH) worldwide, as Executive Director in 2009. During her tenure, CARES completed its first strategic planning initiative, updated its website and logo, published guidelines for the development of centers of excellence for congenital adrenal hyperplasia, designated eight centers of excellence across the United States and collaborated on the development of CAHtalog, a CAH registry.  Education, research and awareness remains a top priority for Dina.  Under her leadership, CARES  has significantly expanded its support network, increased educational opportunities, intensified research initiatives, increased advocacy for treatment options, and initiated awareness walks across the country. Her work in the health care industry spans more than three decades.

Dawn Jacob Laney, MS, CGC, CCRC

Dawn is a leader in the fields of genetics and education as well as a certified genetic counselor with over 20 years of experience. In 2016, she was formally recognized as a leader in the field of rare genetic diseases by the National Organization for Rare Disorders. Dawn's academic roles include Assistant Professor of Human Genetics, Director of the Genetic Clinical Trials Center, and Program Leader of the Lysosomal Storage Disease Center (LSDC) Program at Emory University School of Medicine. As a founder and Chief Genetic Officer of ThinkGenetic, Dawn is instrumental in designing and developing the rich, informative content that ThinkGenetic uses as our knowledge base.

About The Sponsors

CARES Foundation, Inc. is a nonprofit organization based in the USA that leads in the effort to improve the lives of the Congenital Adrenal Hyperplasia (CAH) community and seeks to advance quality health care. Through support, advocacy, education, and research represents nearly 8,000 affected individuals, families, and healthcare professionals in the United States and more than 70 countries. CARES provides access to expert care in CAH through physician referrals, an ASK THE EXPERT online service, and eight CARES-designated centers of excellence for CAH across the United States. We offer a variety of patient, caregiver, and family support, as well as several educational opportunities. We strive to advocate for treatment options, patient rights and awareness of CAH. CARES supports research for new and better treatment options, for improved quality of life for patients, and ultimately a cure.  Now in our 3rd decade in service to the CAH community, we continue to grow to help patients live healthier and fuller lives. For more information, visit caresfoundation.org.

Spruce Biosciences is developing and commercializing novel therapies for rare endocrine disorders with significant unmet medical need.  New this year, Spruce is introducing a quarterly, educational webinar series for patients living with rare endocrine disorders and their caregivers. We strive to support the endocrine community by providing answers to your questions with responses from experts in the field, sharing tips to navigating conversations with healthcare providers, compiling resources that address unmet needs and other concerns associated with the disorders, and furnishing tools that help you make informed choices regarding treatments and clinical trial participation. For more information visit sprucebiosciences.com.

About ThinkGenetic: ThinkGenetic is digitally revolutionizing undiagnosed patient identification with the goal of shortening the diagnostic journey for those with an underlying genetic condition. Harnessing the power of electronic health data and validated proprietary algorithms, our solutions precisely identify at-risk patients and provide resources to support critical healthcare decisions. For more information, visit thinkgenetic.com.