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The KnowRare Blog

From the rare community

Personal experiences, practical information and perspectives on research for life with a rare condition.

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Video & Podcasts

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Video & Podcasts

Accepting Help is Hard

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Video & Podcasts

Choosing What to Care About When Navigating a Rare Disease

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Video & Podcasts

Sharing the Silver Linings of Living with a Rare Disease

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Real Stories

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A mother and her baby daughter living with 18p deletion syndrome, in a hospital setting
Real Stories

Kamerie's 18p Deletion Journey

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Real Stories

Just His Mom: Learning to Mother a Child With a Rare Disease

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Real Stories

Living with Osteogenesis Imperfecta: Lucky’s Story

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Rare Tips

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Rare Tips

Danon Disease Gene Therapy Study Moves Forward After FDA Review

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Rare Tips

9 Things to Know After Diagnosis

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Rare Tips

Organization Spotlight: Remember the Girls

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Rare Resiliency

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Rare Resiliency

Halloween: Joyful Crip Time

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Rare Resiliency

What Is Patient-Centered Outcomes Research (PCOR) —and Why It Matters to Rare Families

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Rare Resiliency

Five Years of Waiting Rooms

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Mental Health

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Mental Health

Caring for the Unseen: Supporting Caregivers of Those with Rare Diseases

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Mental Health

The Underappreciated Art of Slowing Down

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Mental Health

Embrace the Ask: How to Seek The Support You Need

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Rare Leaders

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Rare Leaders

Dr. David Fajgenbaum: How one doctor turned hope into action to treat his own rare disease

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Rare Leaders

Improving Access to Specialized Care For Myositis

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Rare Leaders

Changemakers in Rare: Becca Salky

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Clinical Trials

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Clinical Trials

Celebrating International Clinical Trials Day

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Clinical Trials

What to Know About Observational Studies — and Why They May Be Right for You

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Clinical Trials

Have A Goal To Taper Off Your Use Of Steroids? Many Clinical Studies For New Drugs Share The Same Mission

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Organizational Spotlight

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Organizational Spotlight

Organization Spotlight: Danon Foundation

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Organizational Spotlight

Therapy Near Me

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Organizational Spotlight

Organization Spotlight: Kaya Girl Legacy, Inc.

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News

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News

Which is the worst time of the year for people with ITP?

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News

A Danon Disease Study Wins Top Research Award

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News

News in ITP: Studying Fatigue in Long-Term ITP

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