COMMUNITY STORIES Laura Will COMMUNITY STORIES Laura Will

Learning to Juggle it All as a Caregiver: The Four States of the Caregiver's Identity

After her infant son was diagnosed with a rare brain malformation, Laura had an identity crisis. She was no longer just-a-mom, but also a family caregiver. Although this newly acquired title may be emotional and exhausting at times, Laura discovered in herself unforeseen skills and a remarkable strength. She delves into the description of the four states of a caregiver’s identity and creates a beautiful metaphor for this extraordinary role.

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COMMUNITY STORIES Laura Will COMMUNITY STORIES Laura Will

Cultivating Flexible Hope: A look at the emotional cycles in chronic illness

While I can not trust the future health of my child, I have found things I can trust: his doctors, his one-to-one aid, my partner, the coffee maker, laughter, and my desire to care for my son. Naming the things we trust can offer some sense of control. With that trust, the fear is held at bay; and, if we pay attention, hopeful little moments start unfolding before us.

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COMMUNITY STORIES Laura Will COMMUNITY STORIES Laura Will

Introducing Rare Resiliency: A column for parents of children with rare, serious, or chronic illness

Rare Resiliency is a monthly column written and/or curated by Laura Will. This column explores the concepts and skills that play a protective role against chronic and acute stress. Each article challenges and encourages the reader to continue to develop that inner steadying strength as they face illness and uncertainty, sorrow and joy.

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RARE RESOURCES Laura Will RARE RESOURCES Laura Will

10 Books for Families of Children with Rare Disease

After Laura Will’s son was diagnosed with a rare condition, she felt unsure how to talk to her kids about the diagnosis and corresponding disability. She’s found that children’s books have been a wonderful way to safely initiate conversations with her children about the difficult topics that exist within the world of rare disease. In this article she shares her list of book recommendations with the Know Rare community.

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CHANGEMAKERS Know Rare Team CHANGEMAKERS Know Rare Team

Organization Spotlight: NephCure Kidney International

Nephcure Kidney International's mission is to accelerate research for effective treatments for rare forms of Nephrotic Syndrome, and to provide education and support that will improve the lives of those affected by these protein-spilling kidney diseases. NephCure addresses both individual and over-arching community needs for those with kidney disease.

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COMMUNITY STORIES Laura Will COMMUNITY STORIES Laura Will

A Dragon Mom’s Story: Facing Grief and Life Threatening Illness with Poetry

When I first started expressing concern about Alden’s development, everyone told me not to compare Alden to his big sister, Hadley. I was not comparing. As a mother and a nurse, I knew in my gut that something was seriously wrong. After weeks of second guessing my instincts, I finally caught one of Alden’s atypical movements on video. It was Memorial Day, 2020. He was 4.5 months old. I sent the video to the on-call doctor at his PCP office, who took one look at it and asked us to please bring him into the emergency room immediately. Forty eight hours, an EEG and an MRI later, our family was forever changed.

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CLINICAL TRIALS Evelyn Leigh CLINICAL TRIALS Evelyn Leigh

Four Reasons to Participate in a Phase Four Clinical Trial

As a member of the rare community, you may know something about the process a new medication must go through before it receives FDA approval. Clinical trial phases 1 through 3 are conducted to establish the safety, effectiveness, and optimal dosage of a new treatment before it is made available to the public. But did you know that some drugs undergo an additional step post-approval to track their performance in the real world? These post-marketing studies, called phase 4 studies, help manufacturers learn more about long-term benefits and risks and offer a number of benefits to study participants.

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