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
Joint webinar series by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN). The speaker is a Specialist in Pediatric Neurology at Vall d'Hebron University Hospital and Principal Investigator in Pediatric Movement Disorders at the Vall d'Hebron Research Institute. Her work aims to improve …
Webinar: ‘Basal ganglia diseases in childhood’ by Belén Perez Dueñas Read More »
***CANCELLED*** Rehabilitation and Mobility Devices, presented by speakers from Children’s Healthcare of Atlanta Apr 27, 2022 07:00 PM in Central Time (US and Canada) Register here: https://bit.ly/3334ujQ
The EPNS Congress provides an opportunity to learn about the latest developments in the rapidly evolving field of child neurology, including basic science, diagnostic methods, and novel treatments. You can network with colleagues and industry partners all focused on delivering the best possible care for children with neurological disorders.https://epns-congress.com/
The ASGCT Pre-Meeting Workshop What Patients Can Expect in a Gene Therapy Clinical Trial, is taking place on Sunday, May 15 from 1 - 5pm ET in Washington, DC. The workshop is intended for a patient/caregiver/advocate audience to learn more about this process. We hope you will join us for this educational opportunity. There are …
What Patients Can Expect in a Gene Therapy Clinical Trial Read More »
