ALD Connect Virtual 2021 Annual Meeting and Patient Learning Academy on November 12 and 13, 2021!https://aldconnect.org/calendar/ald-connect-2021-annual-meeting-and-patient-learning-academy-virtual/
With the growing emphasis on value-based payments in healthcare, there is significant potential for enhanced access to pediatric palliative care services. This discussion will highlight the challenges to access of PPC services in traditional reimbursement models, and it will discuss existing state models that have been developed. Finally, a process for exploring policy and legislative …
Alex TLC Community Weekend on the 20th & 21st November, is designed to bring together sufferers of leukodystrophy and their families, alongside doctors, researchers and scientists from around the world to meet, learn and support one another over a weekend of talks and activities. Dr John Livingston will be joining to give his update about …
Knockout ALD organizes and hosts the Run for ALD, Cure the Boys 5K and a one-mile-walk event in Maryland Heights, Missouri, to raise money for the ALD Research Fund at the University of Minnesota. This year’s event will be in person and virtual, on November 20, 2021. Email Julie at [email protected] with questions. Website: www.knockoutald.com
Please join us for a #4HLFamilies Zoom Hangout. To attend, please email [email protected] for an invite with the Zoom link. We look forward to getting together!
Sister's hope Foundation presents - ALSP Community Support Group Meeting (Guest Speaker: Cynthia Beers, – Owner at Red Head Yoga, Author of Mindful Yoga for Teen Anxiety & Mindful Yoga for Adult Anxiety) https://sistershopefoundation.com/events/caregiver-support-group-meeting-3/
Alex and Liam Chapleau have a brother, Aiden, who is affected by MLC. The goal of this webinar is to explore how siblings, and the family unit as a whole, are impacted by the challenges faced by a leukodystrophy diagnosis. This session is not just for siblings; all are welcome to attend and participate. The …
January 24 @ 7:00 pm - 8:00 pm EST Please join us for a community call on Monday, January 24th at 7 PM EST for symptomatic women facilitated by Kathleen O’Sullivan-Fortin and Janis Sherwood. Please reach out to [email protected] if you have any questions. Please use the following link to register: http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07eizzsb5y9fb04ad9 **Please do …
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 [email protected] 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 [email protected] with any questions. Please use the following …
