Missed an event? Video recordings are streaming On Demand! Some episodes are available on the Being Rare Podcast!

In honor of Trisomy Awareness Month, Sarita sits down with E.WE Foundation partners, Sonny Mullen with Help Hope Live and Dr. Deborah Bruns with the TRIS Project to talk about how their work can support Trisomy families. Watch the live recording or listen in on our Being Rare Podcast! *Premieres March 28th!

A raw conversation about race, health, and stigma! Being Rare Podcast host Sarita Edwards sits down with Stacey Brown, Georgene’ Glass, and Dionne Stalling to discuss navigating life with rare disease and as rare disease caregivers, while black. No topic is off limits! Watch the live recording!

Watch the live recording of Self Care: Prioritizing Yourself. Being Rare host Sarita Edwards is joined by Dr. Aditi Kantipuly, Michelle Fruhshien, and Jeffrey Benton to talk about how you can start your self care routine in as little as 7 minutes in the comfort of your home.

Dr. Aditi Kantipuly – author of The Zebra Alphabet, world’s first alphabet book for rare conditions spreading kindness one alphabet at a time and creator of #movefor7, a movement to encouraging folks to commit to 7 minutes of intentional movement and share the movements publicly on social media platforms.

Michelle Fruhshein – wife and rare mom, digital creator, Jordan Syndrome advocate, raising awareness one reel at a time, special educator

Coach Jeffrey Benton – National Academy of Sports Medicine Certified Personal Trainer and health enthusiast

October is National Family History Month. In this exclusive Being Rare Podcast *Live we’re talking about the importance of knowing your family’s health history. In this episode, Sarita is talking with Maria Della Rocca, Senior Director of Patient Services at Global Genes and Molly Martzke, Senior Program Manager at the National Genetics Education and Family Support Center at Expecting Health, and from an advocacy perspective Kareem Edwards, VP of Operations at the E.WE Foundation and friend Heather Gjesvold about the importance in knowing your family’s history and how family diagnoses can help you proactively coordinate your own health. Watch the live recordings – Part 1 and Part 2.

*This event is approved for 4 CEUs.

LEAP into Advocacy Virtual Summit: Utilizing Social Health and Digital Concepts to Influence Critical Health Decisions

The LEAP into Advocacy Virtual Summit will explore how we, as advocates, patients, and caregivers, use social health and digital concepts to inform and influence critical health decisions. Social health is transforming our approach to healthcare; and digital concepts like telehealth continue to be a crucial tool in expanding how we access care. Social health and digital concepts are critical to maintaining and strengthening our health care workforce.

Join us on Thursday, June 30th, 10am CST to better understand how using social health and digital concepts are influencing critical health decisions. Learn more at theewefoundation.org/leapsummit.

*This event is approved for 1 CEU.

Moms & Mental Health: The Importance of Self Care

Self-care is important to maintaining a healthy relationship with yourself. Self-care is about the things we can do to look after our own mental health. Join us on Thursday, May 19th, 11am CST for a conversation about managing ourselves, motherhood, and our mental health.

Panelists: Stephanie Allen, Licensed Professional Counselor & Mental Health Services Coordinator; Shane’ Jackson, Coordination of Benefits Analyst & Parent Advocate; Dr. Ashley Perkins, Doctor of Pharmacy & Mental Health Advocate; and Parvathy Krishnan, Global Advocacy Alliance Director & Parent Advocate

Join us for a special Mother’s Day edition of the Being Rare Podcast premiering on Sunday, May 8th, 11:00am, CST. Being Rare Podcast welcomes Kate Hart, mom to Hannah, a sweet baby girl diagnosed in utero with Trisomy 18.

*This event is approved for 1 CEU.

Child Abuse & Neglect Prevention

In the US, at least 1 in 7 children experience child abuse or neglect annually. Children with disabilities are at least three times more likely to be abused or neglected than their peers without disabilities, and they are more likely to be seriously injured or harmed by maltreatment. Join us on April 26th, 12pm, CST for a conversation about child abuse prevention, resources, and support.

Panelist: Sallye Longshore, Director, Alabama Department of Child Abuse and Neglect Prevention, The Children’s Trust Fund and Stephanie Wright, Director of Family Services, UCP of Huntsville and Tennessee Valley

*This event is approved for 1 CEU.

Financial advocacy in the context of health involves the ability to assess, understand, and use financial information in ways that support good health and financial outcomes. Understanding Financial Advocacy will explore financial concepts and enhance awareness about best practice financial solutions. Join us on Wednesday, March 23rd, 11:00am CST!

Guest Presenter: Dustin Mayo, Vice President, Retail Market Manager, Synovus Bank

Being Rare Podcast is excited to welcome Sarah Tompkins, patient advocate and Ms. Wheelchair Washington USA 2022Join us on Rare Disease Day as we discuss advocacy, pageantry, and life as a rare disease patient.

Listen on Monday, February 28th!

*This event is approved for 1 CEU.

Understanding Parent Leadership: What is Parent Leadership and Why Is It Important?

February is National Parent Leadership Month, dedicated to recognizing the important role of parents and caregivers in their homes and community. Join us as we discuss parent leadership and why it is an important component to gaining valuable insight into healthcare and community programs benefiting children and families. Join us on February 25, 9:00am CST.

Panelists: Molly Martzke, Senior Program Manager, Expecting Health and Ebone Kimber, Licensed Master Social Worker, ProDev with EK.