WELCOME TO RAREDISEASELIVE

We partner with leading clinical specialists and advocacy organizations to bring free online education to patients and caregivers dealing with rare diseases. RareDiseaseLive‘s programs are broadcast live through our virtual learning channel and include a panel of experts, interactive Q&A, polling and slides for an immersive and personalized learning experience.

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New educational program on IPF

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Carcinoid Syndrome

Our program about Carcinoid Syndrome is available on demand

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Diagnosis and Treatment

A collection of articles on the different pulmonary function tests, explaining the tests and how they are conducted, what to expect, and what is typical with ILD. They are part of an expanding section on Diagnosis and Treatment of ILDs.

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Caring for a Loved One with Developmental and Epileptic Encephalopathy

Becoming Empowered with CIDP: Making My Voice Heard

Treatment and Post‐treatment Decisions in SMA: What it Looks Like for Patients, Caregivers, and Families

Obtaining Support and Ongoing Care for Children with SMA after Gene Replacement Therapy

A 6 Module Series

A Closer Look at Hemophilia Management: Improving Outcomes with Personalized Care

WELCOME TO RAREDISEASELIVE

Diagnosis and Treatment

Partners and Supporters