New Twitter Mentions for Effie Parks (@onceuponagene)

@onceuponagene was mentioned in BeginNGS - Newborn Genomic Sequencing to End the Diagnostic Odyssey with Dr. Stephen Kingsmore, Wendy Erler and Tom DeFay

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@onceuponagene was mentioned in Krabbe Disease with Kasey Feldt

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@onceuponagene was mentioned in Uniting Science and Hope - COMBINEDBrain and it's Quest to Transform Research and Treatment for Rare Genetic Neurodevelopmental Disorders with Terry Jo Bichell

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@onceuponagene was mentioned in James G Robinson - More Than We Expected Author - Five Years with a Remarkable Child

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@onceuponagene was mentioned in Genomics England Clinical Lead for Genetic Counseling - Amanda Pichini

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@onceuponagene was mentioned in Utilizing Child Life Specialists - Empowering Rare Disease and Medically Complex Families in Hospitals Nationwide with Child Life On Call Founder - Katie Taylor

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@onceuponagene was mentioned in These Two Rare Disease Parents Never Met Until Now and Have Everything In Common - Chronic Compassion Chronicles with Kim Gilsdorf and Daniel DeFabio

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@onceuponagene was mentioned in From Heartbreak to Hope - With CEO of Parent Project Muscular Dystrophy, Pat Furlong

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@onceuponagene was mentioned in Mastering the Art of the Supermarket Answer When Someone Asks, How Are You with Jennifer Siedman

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@onceuponagene was mentioned in Policy as a Pathway - Advocating for Rare Disease, Cri Du Chat, Disability and Palliative Care with Lindsey Topping - Schuetz

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@onceuponagene was mentioned in A Leap of Faith - Rare Disease Moms on the Bittersweet Joy of New Babies

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@onceuponagene was mentioned in GeneDX - A Genetic Diagnosis Matters with Gay Grossman and Paul Kruszka

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@onceuponagene was mentioned in The Juggle is Real - Navigating Parenthood and Rare Disease Leadership with Kim Nye and Mike Graglia

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@onceuponagene was mentioned in A Courageous Gift - The Power of Brain and Tissue Donation in Rare Disease Research with Anne Rugari

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@onceuponagene was mentioned in Beyond the Crossroads- Rebuilding and Reclaiming Identity After Sacrificing Careers for Caregiving with Emily Crawford

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@onceuponagene was mentioned in Soundtrack of Silence - Love, Loss, and a Playlist for Life with Neurofibromatosis Type 2 (NF2) Patient Advocate - Matt Hay

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@onceuponagene was mentioned in Advocating with Heart - Striking the Balance Between Medical Insights and Personal Narratives - A Tribute to Valerie Marie with RING14 Co-Founder Yssa Dean DeWoody

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@onceuponagene was mentioned in Navigating Parenthood as a Rare Mom - Expert Insights into Special Needs Financial Planning with Mary McDirmid from Special Abilities Network

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@onceuponagene was mentioned in Fundraising Strategies for Patient Advocacy Organizations Raising Money for Rare Disease Research with Lindsay Stevens

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@onceuponagene was mentioned in Being Brave, Curious and Motivated to Help Make a Difference with DLG4 Research Mama Payal Patel

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@onceuponagene was mentioned in Happiness Is Meant to Be Shared with Author, Storyteller, and NEMO Dadvocate Andrés Treviño

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@onceuponagene was mentioned in Never Give Up - Two Decades of Struggles From Diagnosing Their Children to Starting a Clinical Trial For Aspartylglucosaminuria with Rare Mom Julia Taravella

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@onceuponagene was mentioned in From Cancer Biologist to Rare Disease Mom - Digging Into the Data to Better Understand SCN8A with Madeleine Oudin PhD - Professor of Biomedical Engineering at Tufts

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@onceuponagene was mentioned in Honoring a Husbands Legacy by Finishing His Work on a Documentary About Rare Disease Acute Flaccid Myelitis and Her Own Grief Along the Way with Sarah Potter

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@onceuponagene was mentioned in A Rare Collection - To the Moon and Back

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@onceuponagene was mentioned in Real Rare Mama Shop Talk - Deciding What We Share About Our Lives and Recognizing How Far We've Come with Each Passing Year with Alyssa Poskarbiewicz CHARGE Syndrome Mom

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@onceuponagene was mentioned in A Rare Collection - Exhausted and Energized

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@onceuponagene was mentioned in Take Part Founders and PYROXD-1 Parents - Matt and Maria Granados

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@onceuponagene was mentioned in Patients and Caregivers Being Compensated to Tell Their Stories and Get Connected to Research Opportunities with Rare Patient Voice Founder Wes Michael

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@onceuponagene was mentioned in Helping Undiagnosed Patients Who Experience Symptoms of Rare Diseases Find Answers with Free Genetic Testing in a Matter of Weeks with Probably Genetic CEO Lukas Lange

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