January 25 @ 7:00 pm - 8:00 pm EST Please join us for a community call facilitated by Ken Dieffenbach and Justin DAgostino on Tuesday, January 25th at 7 PM EST for AMN men. Please reach out to info@aldconnect.org if you have any questions. Please use the following link to register: http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07eizzsb4obed2c5ee **Please do not …
January 26 @ 7:30 pm - 8:30 pm EST Please join us for a community call facilitated by Suzanne Flynn, Tara Meady, and Kathleen OSullivan Fortin on Wednesday, January 26th at 7:30 PM EST for Newborn Screening, Young Families, and Parents of Asymptomatic Children. Please reach out to info@aldconnect.org with any questions. Please use the following …
A free discussion for Women who are carriers of the ALD/AMN gene and are symptomatic, or asymptomatic. Lead by two women who are carriers and affected by AMN. This session WILL NOT be recorded. Wednesday, January 26th, 7 PM Central Register here: https://bit.ly/32Z94j5
An open discussion for spouses of people affected with leukodystrophies. This session IS NOT recorded. Register here: https://bit.ly/3t5cLym
February 6 @ 2:00 pm - 3:00 pm EST Please join us for a new community call facilitated by Jillian Smith and Katie Mullen on Sunday, February 6th at 2PM EST for all ALD Parents and Caregivers. Parents and caregivers of children with any ALD phenotype (Newborn Screening diagnosis, cerebral ALD etc.) are welcome to …
ALD Connect: Community Call: ALD Parent and Caregiver Support Read More »
Unfortunately, our webinar about Advocating and Supporting for Your Student with an IEP, originally scheduled for this upcoming Wednesday, needs to be rescheduled. We are working with the speaker to determine a new date. When we have a new date chosen, we will notify you by email. You will not need to re-register for the …
ULF Webinar: Supporting and Advocating for your Child with an IEP Read More »
Rare Disease Day is an observance held on the last day of February to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families.
ALSP Awareness Month
This is a session for parents of people affected by leukodystrophies, often their caregivers. This session WILL NOT be recorded. Time Mar 30, 2022 07:00 PM in Central Time (US and Canada) Parents of Affected Children, Register here: https://bit.ly/3qZlWxS
An open discussion for families who recently received their leukodystrophy diagnosis. No topic is off limits and we encourage participation at the attendees comfort level. This session WILL NOT be recorded. Time Mar 30, 2022 07:00 PM in Central Time (US and Canada) Adults and Newly Diagnosed Families, Register here: https://bit.ly/3Ga88Xu
