The Rare Sibling Experience

The impact of a rare disease extends beyond the patient and is interwoven into their entire family dynamic. Siblings of rare disease patients often face personal challenges inside and outside of the home. Guidance and nurturing can empower unaffected siblings to be supportive members of the family while maintaining their own unique identities.

Join NORD to hear from child life specialist Kate McGowen and psychologist Dr. David Rintell, who will discuss commonly observed barriers and best practices for fostering healthy sibling relationships. Rare sibling Hannah Raskin-Gross will share her experience growing up with a brother who has a rare disease and how it has shaped her commitment to advocacy.

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