09:10

Ep 101. What's happening in May? Myositis Moonwalk, Mother's Day, Mental Health, One Minute Mondays

11:10

Ep 100. Protecting Our Futures: Black Maternal Health and Child Abuse Neglect & Prevention

12:29

Ep 99. Funding Challenges for Small Nonprofits, Research, Scholarships, Inclusion, and More!

24:10

Ep 98. What Are You Telling Families Who Get A Trisomy 18 Diagnosis?

51:00

Health Equity Community Workshop hosted by the E.WE Foundation

22:10

Ep 97. March is Trisomy Awareness Month & Women's History Month

24:07

Ep 96. How We Chose to Navigate the Holidays and the Final "Happy New Year" of 2024!

01:01:58

Intersectionality of Advocacy and Public Policy: How Your Story Impacts Legislative Decision-Making

01:01:41

Transitioning from Pediatrics to Adult Healthcare: The Good & Bad to Independent Care Coordination

01:05:18

Leveraging Patient Experiences to Advance Research and Next Generation Medicine

55:06

Normalizing Mental Health: Shifting the Narrative from Stigma to Stability

06:30

Ep 95. We Haven't Spoken Since Last Year, Happy New Year!

10:13

Nisma Adbraman - Research Intern, Gene Therapy for Trisomy Disorders #internship #research #trisomy

15:02

Harlie Williams - Advocacy Intern, Newborn Screening Advocacy #internship #advocacy #newborn #survey

07:15

Vy Quynh Vu - Mental Health Intern, Final Project Presentation #mentalhealth #internship

08:51

Kim Nguyen - General Intern, Biotech Funding and Social Media Management, Final Project Presentation

30:54

Jaimie Lopez-Alvarez - Health Equity Intern, Prenatal Testing: A Health Equity Project Presentation

01:00:06

Vivian Duong - Health Equity Intern, Community Workshop, Final Project #internship #health #equity

01:16

Ep 94. Navigating the Holidays with Rare Disease #podcast #holidays #raredisease #selfcare

19:53

Ep 93. Overwhelmed by Grief #podcast #grief #raredisease #trisomy18

56:12

Ep 92. Know Your Family History: A Conversation About Health Legacy #podcast #family #health #legacy

01:38

Ep 91. #sizzle- Newborn screening can dispel inequities #podcast #equity #inequity #newbornscreening

01:03

Ep 91. #sizzle - Newborn screening conversations should start with OB. #podcast #obstetrics #newborn

48:40

Ep 91. Let's talk about Newborn Screening in Alabama #podcast #alabama #newbornscreening #baby

08:42

Ep 90. Who's responsible for providing parents newborn screening information? #podcast #newborns

01:10

Parents need more newborn screening education. #podcast #newbornscreening #awareness #education

00:39

Stop expecting parents to positively respond to outcomes you haven't prepared them for. #podcast

00:44

I'm not a newborn screening expert but I am newborn screening aware #newbornscreening #podcast

00:50

Ep 88. #sizzle - When A New Experience Is Familiar #podcast #trisomy18 #healthcare #trisomy18

00:46

Ep 88. #sizzle - There's honey in Being Rare Studios #podcast #couple #parents #blacklove

00:58

Ep 88. #sizzle - I was disappointed with the healthcare system #podcast #raredisease #trisomy18

25:37

Ep 88. A Poor Newborn Screening Experience #podcast #newborn #baby #raredisease #trisomy18

01:04

Ep 87. #sizzle - What Is Newborn Screening? #podcast #newborn #publichealth #raredisease #trisomy18

10:15

Ep 87. Our Newborn Was Refused Newborn Screening #podcast #raredisease #newborn #test #trisomy18

01:01

Ep 87. #sizzle- You Don't Need Newborn Screening, Your Child Is Dying #podcast #raredisease #newborn

01:03

Ep 86. One Minute Monday - Peer Support #podcast #oneminute #peersupport #supportgroup

01:14

Ep 85. #sizzle - You Have To Be In A Similar Situation To Understand #podcast #inclusion #trisomy18

00:44

Ep 85. #sizzle - Church Can Be Unpleasant Too #podcast #raredisease #mentalhealth #trisomy18

15:30

Ep 85. A Church Experience #podcast #church #raredisesase #trisomy18 #wheelchair #inclusion

01:02

Ep 84. The Small Group - #Inclusion #podcast #raredisease #church #smallgroup

02:02

Ep 83. #sizzle - When Accessibility is Inaccessible #podcast #raredisease #accessibility #wheelchair

00:55

Ep 83. #sizzle - Inclusive Gift Shop #podcast #inclusion #giftshop #wheelchair #raredisease #atlanta

00:46

Ep 83. #sizzle - Flying with a Wheelchair #podcast #flights #wheelchair #mentalhealth

00:43

Ep 83. #sizzle - Tell Us About Your Travel Experiences #podcast #travel #raredisease #wheelchair

20:44

Ep 83. Summer Road Trip #podcast #raredisease #summer #beingrare

01:19

Ep 83. #sizzle - Navigating Elijah's Blends While Traveling #podcast #beingrare #raredisease #travel

01:03

Ep 82. One Minute Monday - Preparation #podcast #selfcare #mentalhealth #beingrare

09:38

Ep 81. Ten Minutes of Sarita - Girl, Where You Been? #podcast #selfcare #mentalhealth #conversation

01:20

Ep 81 #sizzle - Prioritizing Self Care #podcast #beingrare #selfcare #mentalhealth

01:13

Ep 80. One Minute Monday - Priorities #podcast #beingrare #oneminute #selfcare #mentalhealth

02:48

Ep 79. Being Rare #Podcast - Season 3 #podcaster #beingrare #raredisease

01:09:15

Ep 77. #Trisomy Awareness Month! Hear from E.WE Foundation Partners

02:07:10

Ep 73. Being Rare & Black - A Being Rare #Podcast Rare Disease Day Exclusive #black #raredisease

37:10

Ep 69. Self Care - The Importance of Prioritizing Yourself #selfcare #mentalhealth

01:01

Welcome to the E WE Foundation: A Global Healthcare Advocacy Organization #trisomy18 #raredisease

02:35

2022 RARE Health Equity Summit #health #equity #raredisease #diversity #inclusion #rare

31:12

Ep 63. Know Your Family History - A Health History Conversation Part 2 #health #history #awareness

30:48

Ep 62. Know Your Family History - A Health History Conversation Part 1 #health #history #awareness

03:02

Mental Health Matters: Connecting the Dots #mentalhealth #mentalhealthmatters #awareness #advocacy

12:15

Our Journey of Life, Love, and Hope - A Family Impact Story #advocacy #family #impact #story