ALD Community Calendar

Community Call: Symptomatic Women

Please join us for a community call on Monday, September 26th at 7 PM EDT for symptomatic women with ALD facilitated by Janis Sherwood and Kathleen O'Sullivan-Fortin. Please reach out to [email protected] if you have any questions. Please register with the following link: http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ejdu1ax401cb6c7d.   **Please do not register for this call unless you are…

Details

Date:
September 26, 2022
Time:
7:00 pm - 8:00 pm
Website:
http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ejdu1ax401cb6c7d

Organizer

ALD Connect
Phone
(833) 525-3266
Email
info@aldconnect.org
View Organizer Website

EL-PFDD Debrief with Dr. Al Freedman Session 1

Join us for a group session to debrief and process any thoughts and feelings that were elicited by ALD Connect's July EL-PFDD meeting. The session will be facilitated by Dr. Al Freedman, a licensed psychologist who specializes in rare disease. Spots are limited to ensure personalized discussion, so please register for only one session. Please…

Details

Date:
September 27, 2022
Time:
9:30 am - 11:00 am
Website:
http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ejdpyuowc3480882

Organizer

ALD Connect
Phone
(833) 525-3266
Email
info@aldconnect.org
View Organizer Website

Community Call: AMN Men

Please join us for a community call facilitated by Ken Dieffenbach and Tim Mathwig on Tuesday, September 27th at 7 PM EDT for AMN men. Please reach out to [email protected] if you have any questions. Register using the following link: http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ejdu1axe2b0925a4.   **Please do not register for this call unless you are a patient or…

Details

Date:
September 27, 2022
Time:
7:00 pm - 8:00 pm
Website:
http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ejdu1axe2b0925a4

Organizer

ALD Connect
Phone
(833) 525-3266
Email
info@aldconnect.org
View Organizer Website

Community Call: Newborn Screening, Young Families, Parents of Asymptomatic Children

Please join us for a community call facilitated by Suzanne Flynn, Tara Meady, and Kathleen O’Sullivan-Fortin on Wednesday, September 28th at 7:30 PM EDT for Newborn Screening, Young Families, and Parents of Asymptomatic Children. Please reach out to [email protected] with any questions. Please register using the following risk: http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ejdu1axm4956e050.   **Please do not register for…

Details

Date:
September 28, 2022
Time:
7:30 pm - 8:30 pm
Website:
http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ejdu1axm4956e050

Organizer

ALD Connect
Phone
(833) 525-3266
Email
info@aldconnect.org
View Organizer Website

Community Call: Cerebral ALD

Please join us for a Cerebral ALD Community Call facilitated by Jesse Torrey on Thursday, September 29th, 2022 at 5 PM EDT for pre-, post-, and non-transplanted families. Please reach out to [email protected] if you have any questions. Please register using the following link: http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07eje2me6b3a6e56d2   **Please do not register for this call unless you…

Details

Date:
September 29, 2022
Time:
5:00 pm - 6:00 pm
Website:
http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07eje2me6b3a6e56d2

Organizer

ALD Connect
Phone
(833) 525-3266
Email
info@aldconnect.org
View Organizer Website

EL-PFDD Debrief with Dr. Al Freedman Session 2

Join us for a group session to debrief and process any thoughts and feelings that were elicited by ALD Connect's July EL-PFDD meeting. The session will be facilitated by Dr. Al Freedman, a licensed psychologist who specializes in rare disease. Spots are limited to ensure personalized discussion, so please register for only one session. Please…

Details

Date:
October 6, 2022
Time:
6:00 pm - 7:30 pm
Website:
http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ejdpyup83f8e9f1f

Organizer

ALD Connect
Phone
(833) 525-3266
Email
info@aldconnect.org
View Organizer Website

Community Call: ALD Parent and Caregiver Support

Please join us for a community call facilitated by Jillian Smith and Katie Mullen on Sunday, October 9th at 2PM Eastern for all ALD Parents and Caregivers. Parents and caregivers of children with any ALD phenotype (Newborn Screening diagnosis, cerebral ALD etc.) are welcome to join. Please reach out to [email protected] with any questions. You…

Details

Date:
October 9, 2022
Time:
2:00 pm - 3:00 pm
Website:
http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ejdu1ay25d7d4ad3

Organizer

ALD Connect
Phone
(833) 525-3266
Email
info@aldconnect.org
View Organizer Website

llamada comunitaria en español

¡Únase a nosotros para una llamada comunitaria ALD en español! Esta convocatoria es un proyecto conjunto entre la Fundación Lautaro te Necesita y ALD Connect y será facilitada por Verónica de Pablo y Jean Cappello. La convocatoria se realizará el 17 de octubre a las 5pm EDT (Hora UTC-4)/ 18 hs de Argentina. Regístrese usando…

Details

Date:
October 17, 2022
Time:
5:00 pm - 6:00 pm
Website:
http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ejdu1aydfe271a5a

Organizers

ALD Connect
Fundación Lautaro te Necesita

Community Call: Symptomatic Women

Please join us for a community call on Monday, October 24th at 7 PM EDT for symptomatic women with ALD facilitated by Janis Sherwood and Kathleen O'Sullivan-Fortin. Please reach out to [email protected] if you have any questions. Please register using the following link: http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ejfpripp449c4121.    **Please do not register for this call unless you are…

Details

Date:
October 24, 2022
Time:
7:00 pm - 8:00 pm
Website:
http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ejfpripp449c4121

Organizer

ALD Connect
Phone
(833) 525-3266
Email
info@aldconnect.org
View Organizer Website

Community Call: AMN Men

Please join us for a community call facilitated by Ken Dieffenbach and Tim Mathwig on Tuesday, October 25th at 7 PM EDT for AMN men. Please reach out to [email protected] if you have any questions. Please register for the meeting using the following link: http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ejfprirmf961ee1c.   **Please do not register for this call unless you…

Details

Date:
October 25, 2022
Time:
7:00 pm - 8:00 pm
Website:
http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ejfprirmf961ee1c

Organizer

ALD Connect
Phone
(833) 525-3266
Email
info@aldconnect.org
View Organizer Website

Community Call: Newborn Screening, Young Families, Parents of Asymptomatic Children

Please join us for a community call facilitated by Suzanne Flynn, Tara Meady, and Kathleen O’Sullivan-Fortin on Wednesday, October 26th at 7:30 PM EDT for Newborn Screening, Young Families, and Parents of Asymptomatic Children. Please reach out to [email protected] with any questions. Please register using the following link: http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ejfpris2bcdb0765.   **Please do not register for…

Details

Date:
October 26, 2022
Time:
7:30 pm - 8:30 pm
Website:
http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ejfpris2bcdb0765

Organizer

ALD Connect
Phone
(833) 525-3266
Email
info@aldconnect.org
View Organizer Website

Cerebral ALD Patients, Families, and Caregivers (Pre-, Post-, and Non-Transplanted) Community Call

Please join us for a Cerebral ALD Community Call facilitated by Jesse Torrey on Thursday, October 27th, 2022 at 5 PM EDT for pre-, post-, and non-transplanted families. Please reach out to [email protected] if you have any questions. Please register using the following link: http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ejfprisof7cb78d2   **Please do not register for this call unless you…

Details

Date:
October 27, 2022
Time:
5:00 pm - 6:00 pm
Website:
http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ejfprisof7cb78d2

Organizer

ALD Connect
Phone
(833) 525-3266
Email
info@aldconnect.org
View Organizer Website

If you would like to add an event to the ALD Community Calendar, please email your event details [email protected]. Please include the name of the event, description, and contact information. Thank you!