All Episodes
Being Rare Podcast — 111 episodes
EP 109. Navigating Life with Ataxia SCA15
EP 108. Big Ride, Bigger Mission with Royce Robertson
Ep 107. Health Equity Insights: Discussing the Inequities in the Rare Disease Community Report
Ep 106. Being Rare and Black: A Rare Disease Day Exclusive
Ep 105. Prioritizing Self Care Part 2: Finding What Works For You
Ep 104. Prioritizing Self Care Part 1: My Body Forced Me to Change
Ep 103. Transitioning Truths: Navigating A Medically Complex Diagnosis From Childhood to Adulthood
Ep 102. Hello 2025: What's In, What's Out - Being Rare Edition
Ep 101. What's happening in May? Myositis Moonwalk, Mother's Day, Mental Health, One Minute Mondays
Ep 100. Protecting Our Futures: Black Maternal Health and Child Abuse Neglect & Prevention
Ep 99. Funding Challenges for Small Nonprofits, Research, Scholarships, Inclusion, and More!
Ep 98. What Are You Telling Families Who Get A Trisomy 18 Diagnosis?
Ep 97. March is Trisomy Awareness Month & Women's History Month
Ep 96. How We Chose to Navigate the Holidays and the Final "Happy New Year" of 2024!
Ep 95. We Haven't Spoken Since Last Year, Happy New Year!
Ep 94. Navigating the Holidays with Rare Disease #podcast #holidays #raredisease #selfcare
Ep 93. Overwhelmed by Grief #podcast #grief #raredisease #trisomy18
Ep 92. Know Your Family History: A Conversation About Health Legacy #podcast #family #health #legacy
Ep 91. Let's talk about Newborn Screening in Alabama
Ep 90. Who's responsible for providing parents newborn screening information? #podcast
Ep 89. 9/11 #podcast #911 #beingrare
Ep 88. A Poor Newborn Screening Experience
Ep 87. Our Newborn Was Refused Newborn Screening
Ep 86. One Minute Monday - Peer Support #podcast #oneminute #peersupport #supportgroup
Ep 85. A Church Experience
Ep 84. The Small Group - #Inclusion #podcast #raredisease #church #smallgroup
Ep 83. Summer Road Trip
Ep 82. One Minute Monday - Preparation #podcast #selfcare #mentalhealth #beingrare
Ep 81. Ten Minutes of Sarita - Full episode
Ep 81 #sizzle - Prioritizing Self Care #podcast #beingrare #selfcare #mentalhealth
Ep 80. One Minute Monday - Priorities
Ep 79. Welcome to Season 3 of the Being Rare Podcast!
Ep 78. One Minute Monday: Isolation - When You Don't Feel Welcomed
Ep 77. Trisomy Awareness Month! A conversation with E.WE Foundation partners
Ep 76. One Minute Monday: Bullying - When Your Kid Is The Joke Of Conversation
Ep 75. One Minute Monday: Words - When Someone Uses The Word Retarded
Ep 74. One Minute Monday: Community - When Community Becomes Family
Ep 73. A Being Rare Podcast - Rare Disease Day Exclusive #podcast #beingrare #raredisease
Ep 72. One Minute Monday: Friendship - Hiring Your Child A Friend
Ep 71. One Minute Monday - Feeling Judged
Ep 70. One Minute Monday: Collaboration - When You're Not Wanted
Ep 69. Self Care - The Importance of Prioritizing Yourself #selfcare #raredisease
Ep 68. One Minute Monday: School Support - Helping Students Be Their Best
Ep 67. One Minute Monday: Selfishness - When Accessibility is Inaccessible
Ep 66. One Minute Monday - Self Care and What It Means For You
Ep 65. One Minute Monday - Happy New Year : Being Your Best You
Ep 64. One Minute Monday - Being Thankful
Ep 63. Know Your Family History Part 2 with Kareem Edwards and Heather Gjesvold
Ep 62. Know Your Family History Part 1 with Maria Della Rocca and Molly Martzke
Ep 61. One Minute Monday - Being Supportive: No One Likes Feeling Judged
Ep 60. Newborn Screening Awareness: Understanding Baby's First Test
Ep 59. One Minute Monday : Thoughtful Curiosity - Embracing What Makes Us Different
Ep 58. One Minute Monday - Intentions: Learning To Mind Our Business
Ep 57. One Minute Monday: Germs - Keep Your Germs To Yourself
Ep 56. One Minute Monday: Transitions - When Something Difficult Turns Out Good
Ep 55. One Minute Monday: Take A Break - You Deserve It
Ep 54. One Minute Mondays: Distractions - When "Your" Distractions Cause Someone Else Harm
Ep 53. One Minute Monday: Patience - When Traditional Timelines Don't Accurately Measure Development
Ep 52. One Minute Monday: Being Delayed - Delay Is Not Denied
Ep 51. One Minute Monday: Poop - Finding Joy in Poopisodes
Ep 50. One Minute Mondays: Perception - Perceiving That Your Kid Is A Burden [to Others]
Ep 49. Moms & Mental Health: The Importance of Self Care
Ep 48. One Minute Mondays: Shared Spaces - There's Enough Room For Us All
Ep 47. One Minute Monday: Trust - Learning How to Trust Those Responsible For Your Nonverbal Child
Ep 46. A Special Mother's Day Edition of the Being Rare Podcast
Ep 45. New Beginnings - Welcome to Season 2 of the Being Rare Podcast!
Ep 44. Child Abuse & Neglect Prevention
Ep 43. One Minute Mondays - Pressure
Ep 42. One Minute Mondays - Celebrations
Ep 41. Understanding Financial Advocacy
Ep 40. Trisomy Awareness Month with WACE AM 730 Inspirational Radio
Ep 39. One Minute Monday - Emotions
Ep 38. One Minute Mondays - Community
Ep 37. Rare Disease Day with Sarah Tompkins, Ms. Wheelchair Washington USA 2022
Ep 36. Understanding Parent Leadership: What Is Parent Leadership and Why Is It Important?
Ep 35. One Minute Monday - Being Fulfilled
Ep 34. One Minute Monday - Feeling Rushed
Ep 33. One Minute Mondays - Compromise
Ep 32. One Minute Mondays - Balance
Ep 31. One Minute Mondays - Unexpected
Ep 30. One Minute Mondays - Resolutions
Ep 29. One Minute Mondays - Gratitude
Ep 28. Saying No - Repod
Ep 27. One Minute Mondays - Emotions
Ep 26. The Choice - Repod
Ep 25. One Minute Mondays - Being Thankful
Ep 24. One Minute Mondays - Patience
Ep 23. One Minute Mondays - Being Guarded
Ep 22. One Minute Mondays - Differences
Ep 21. One Minute Monday - Opportunities
Ep 20. One Minute Tuesday - Rest
Ep 19. One Minute Mondays - Inclusion
Ep 18. One Minute Monday - Support
Ep 17. Supportive Adult Series: Extended Bedside Manner
Ep 16. One Minute Monday - Amazement
Ep 15. One Minute Mondays - Being Relatable
Ep 14. Father's Day Takeover - Part Two
Ep13. Father's Day Takeover - Part One
Ep 12. One Minute Tuesday - Saying No
Ep 11. One Minute Tuesday - Expectations
Ep 10. One Minute Monday - Resentment
Ep 9. A Journey of Faith
Ep 8. One Minute Mondays - Balance
Ep 7. Sharing Your Story
Ep 6. One Minute Tuesday
Ep 5. Surviving Loss
Ep 4. One Minute Mondays - The Choice
Ep 3. One Minute Mondays - FEAR
Ep 2. Special Episode - Sick Days
Ep 1. One Minute Monday - ACCESSIBILITY
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