California law and regulation requires that regional centers display on their Web sites information about the dollar value of services they purchase for clients. These data (called "purchase of service" or "POS" data) must be reported separately by clients' ethnic/racial group, langauge and diagnosis.
The Rare Sibling Experience Webinar
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 on Thursday, March 25, 2021, 11 a.m. to 12 p.m. (2-3 p.m. ET) 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.
This webinar, moderated by special guest and child life specialist Eden Van Alstine, is intended for patients, advocates, caregivers, students and the general public.