Topic
Real Stories
43 articles
Real StoriesJust His Mom: Learning to Mother a Child With a Rare Disease
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Real StoriesLiving with Osteogenesis Imperfecta: Lucky’s Story
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Real StoriesMariah’s Story: "When The Music Played, She Danced”
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Real StoriesMy Story: Kaya’s Light and the Call to Awareness
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Real StoriesI Am Still Here: A Voice from the Rare Side
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Real StoriesLiving with Brugada Syndrome: Michael Grivas’ Story
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Real StoriesHow a Second Opinion Changed My Daughter’s Life with Multiple Sclerosis
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Real StoriesShare your Rare: Sierra Domb
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Real StoriesOwning What Makes Us Rare
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Real StoriesUnderstanding Epidermolysis Bullosa: A Journey of Pain and Perseverance
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Real StoriesLiving Your Dreams When Living with Rare Disease: How Chris Anselmo Learned to Follow His Heart
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Real StoriesShare your Rare: Edward Gent
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Real StoriesOn Family, Fortitude, and Forces of Nature
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Real StoriesLindsay’s Story: What It’s Like to Live with Myositis
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Real StoriesDefining the Disease: The MOG Project
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Real StoriesAll Good Things
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Real StoriesVisiting the Disease: Orit’s Story
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Real StoriesAvery's Remarkable Rare Path: A One-in-a-Million Diagnostic Journey
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Real StoriesWhat is a Child Life Specialist?
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Real StoriesRole Models Light the Way
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Real StoriesWe All Have a Story to Tell
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Real StoriesHello, Adversity: Introducing Chris Anselmo
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Real StoriesThriving Rare
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Real StoriesShare your Rare: Krystel El Koussa
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Real StoriesShare your Rare: Alice's Story
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Real StoriesA Myasthenia Gravis Health Story: Cate’s formula for remission despite life’s stress
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Real StoriesRare Mom Health Story: Irritability - a Symptom of Being a Rare Caregiver
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Real StoriesLindsay's Story: A Myasthenia Gravis Journey from Despair to Hope
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Real StoriesWhat It’s Like To Live With ITP: Joan’s Story
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Real StoriesWhat It’s Like To Live With ITP: Laura’s Story
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Real StoriesA Day at a Time: Our Journey with Rare Disease and Relentless Seizures
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Real StoriesShare Your Rare: Bryan Kelly
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Real StoriesMoving Mountains: Advocating for My Son’s Individual Education and Health Plans
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Real StoriesKatie McCurdy: How a Woman with MG Helps Rare Patients Tell Complex Stories
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Real StoriesLiving with Greig Cephalopolysyndactyly Syndrome
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Real StoriesLiving with FSGS
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Real StoriesThe Complicated Grief of Losing Someone with a Rare Disease
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Real StoriesWhat I Wish I'd Known About Prader-Willi Syndrome
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Real StoriesWhat I Learned About Caring For Someone with Sickle Cell Disease
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Real StoriesSoar: A Posthumously Published Memoir About One Woman's Defiance in the Face of Sickle Cell Disease
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Real StoriesA Dragon Mom’s Story: Facing Grief and Life Threatening Illness with Poetry
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Real StoriesOrah's Story: Refusing To Give Up with a USP7 Related Disease
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Real StoriesTali's Story: Struggling with Epilepsy and Dravet Syndrome
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