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How We Help
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Rare Resiliency

Featured
Five Years of Waiting Rooms
Five Years of Waiting Rooms
Pregnant After Rare: Week 30
Pregnant After Rare: Week 30
Refractory Epilepsy: Reflections and Insights from Parents and Clinicians
Refractory Epilepsy: Reflections and Insights from Parents and Clinicians
The Power of Palliative Care
The Power of Palliative Care
The Language of Rare
The Language of Rare
A Certified Caregiving Consultant’s Reflections on Journaling
A Certified Caregiving Consultant’s Reflections on Journaling
Time Travel in the MRI Suite: A Journal Entry
Time Travel in the MRI Suite: A Journal Entry
I Choose Rare
I Choose Rare
But Mama, Why?
But Mama, Why?
Navigating 'Failure to Thrive': A Mother's Journey Through Diagnosis and Decision-Making
Navigating 'Failure to Thrive': A Mother's Journey Through Diagnosis and Decision-Making
Supporting Healthy Siblings of Children with Medical Complexities: A Mother's Perspective
Supporting Healthy Siblings of Children with Medical Complexities: A Mother's Perspective
"I See You, Dragon Mom": A Poetic Tribute to Rare Disease Caregivers
"I See You, Dragon Mom": A Poetic Tribute to Rare Disease Caregivers
Strive to Thrive, Not Just Survive
Strive to Thrive, Not Just Survive
The Rare Resiliency Toolbox
The Rare Resiliency Toolbox
A Case for More Laughter: Humor as a Part of Seriously Good Caretaking
A Case for More Laughter: Humor as a Part of Seriously Good Caretaking
Navigating Family Planning After a Child's Rare Disease Diagnosis
Navigating Family Planning After a Child's Rare Disease Diagnosis
Gaining Control with Gratitude
Gaining Control with Gratitude
Unleashing the Power of Self-Compassion: A New Year’s Resolution to Suffer Less
Unleashing the Power of Self-Compassion: A New Year’s Resolution to Suffer Less
Learning to Juggle it All as a Caregiver: The Four States of the Caregiver's Identity
Learning to Juggle it All as a Caregiver: The Four States of the Caregiver's Identity
Cultivating Flexible Hope: A look at the emotional cycles in chronic illness
Cultivating Flexible Hope: A look at the emotional cycles in chronic illness
Introducing Rare Resiliency: A column for parents of children with rare, serious, or chronic illness
Introducing Rare Resiliency: A column for parents of children with rare, serious, or chronic illness

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