A mother to a child with a rare condition discusses palliative care programs and how they’ve impacted her family.
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The bittersweet and unpredictable chain of events that made Donna Rae Menard a believer in the clinical trial process.
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Louisa Stringer, a certified caregiving consultant, shares the benefits of journaling for caregivers facing the uncertainties of rare disease.
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In this journal entry, Laura Will shares her emotional experience in returning to the MRI suite where, in 2020, her family’s life ‘would never be the same.’
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My name is Lindsay Alpert and I am thirty-one years old. This is my journey and path to my diagnosis of a rare chronic autoimmune neuromuscular disorder, Myasthenia Gravis.
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In wishing our rare community a happy Rare Disease Day, discover the empowerment and uniqueness that lies behind the word ‘rare,’ leading Laura Will to readily call herself a ‘rare mom.’
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Laura shares her story of living with MS and ITP, a rare disease that affects the number of platelets in the blood. Learn more about her perspective on life, her day-to-day activities, and her experience in joining a clinical study.
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Joan shares her experience of living with ITP, a rare disease that affects the number of platelets in the blood. Learn more about her worries and the useful advice that she offers to the Know Rare community.
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Here’s a rare mom’s reflection on the innocent curiosity of her well child and the questions about disability that she must learn to answer.
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I can recall the sunny, white-walled classroom, on the upper west side of New York City, where I first heard the medical term, “Failure to thrive.” I was a student, working towards a Master’s Degree in Nursing, reviewing diagnostic criteria of various gastrointestinal conditions…
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Read a personal perspective of a mother raising both well and medically-complex young children. Learn about the impact a medically-complex sibling can have on the family dynamic, and access resources that may support the well child in exploring their emotions.
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I can clearly remember the day we finally received his diagnosis. It was 2019, and my son was 14 years old. We had already been treating seizures and developmental delay for years. However, I was not prepared for the actual diagnosis.
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A poem to rare caregivers, by Laura Will
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Research shows that rates of depression and anxiety are elevated among parents and caregivers of children with complex care needs. This is no mystery. I see many contributing factors: grief, chronic stress, poor sleep, caregiving burden, potential loss of work to care for the child, financial stress, social isolation, and spousal relationship problems. Which of these factors rings true for you?
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Hello everyone. I am 35 years old and I have Propionic Acidemia (PA). Life with PA is not always easy. I was diagnosed late, which caused me to have a stroke at a very young age. After years of needing a wheelchair and walker, I made a somewhat normal recovery.
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This month Desmond will head to preschool and be held and cared for by his community, as is his right. For any parent who has been through an individual health plan or an individual education plan (IEP), you know it is no simple task. I would love to share what this has been like for me and my son.
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As a community advocate for Rare Advocacy Movement, Uni Neha has a passion for guiding others in their rare disease journey. We sat down with Uni to talk about her resiliency routine and to hear her advice for others who are looking for new resources to support their wellbeing.
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Discover how humor can be an incredible tool for protecting, connecting, and emboldening caregivers in many of their dark and difficult moments.
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In our family, the love is infinite and the joy is absolute. In many ways we are like any other family; however, as we navigate this decision to have another biological child, the math is painfully different. I feel overwhelmed by uncertainty, the possibility of genetic errors, and the fragility of life.
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Defying the odds, Amy never thought she’d be able to have children. Her pregnancy was high-risk due to her own medical issues. However, she made it through her first trimester of pregnancy and was ready for an ultrasound at 18 weeks. Amy didn’t expect the doctors at her local hospital to tell her that her daughter would never walk or talk.
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