Please join us for a community call on Monday, February 24th at 7 PM EST for symptomatic women with ALD facilitated by Kathleen O'Sullivan-Fortin and Julie Chu. Please reach out to [email protected] if you have any questions. You can register using the following link: https://lp.constantcontactpages.com/ev/reg/t67hj3e *Please note this call is for patients and caregivers only
Please join us for a community call facilitated by Ken Dieffenbach and Tim Mathwig on Tuesday, February 25th at 7 PM EST for AMN men. *Please note this call is for men with AMN. If you are a caregiver who wants to support a son or partner who has AMN, please send us an email.…
Please join us for a community call facilitated by Kathleen O'Sullivan-Fortin and Christie Higuera on Wednesday, February 26th at 7:30 PM EST for Newborn Screening, Young Families, and Parents of Asymptomatic Children. Please reach out to [email protected] with any questions. You can register for the call using the following link: https://lp.constantcontactpages.com/ev/reg/s6zbxcs *Please note this call is for…
Please join us for a Cerebral ALD Community Call facilitated by Jesse Torrey on Thursday, February 27th at 5:00 PM EST for pre-, post-, and non-transplanted families. Please reach out to [email protected] if you have any questions. You can register using the following link: https://lp.constantcontactpages.com/ev/reg/872ypnv *Please note this call is for patients and caregivers only.
Join the Courageous Parents Network to explore how completing healthcare advance directives for/with your child can support your family’s goals and wishes. We will discuss the importance of discussing and documenting healthcare wishes upstream of an emergent/urgent medical event, medical implications of and quality-of-life considerations related to advance directives, and currently available directives. Presented by…
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