ALD Community Calendar

Community Call: AMN Men

Please join us for a community call facilitated by Ken Dieffenbach and Tim Mathwig on Tuesday, July 23rd at 7 PM EDT for AMN men. Register here: https://lp.constantcontactpages.com/ev/reg/fmpxbhy *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…

Details

Date:
July 23
Time:
7:00 pm - 8:00 pm
Website:
https://lp.constantcontactpages.com/ev/reg/fmpxbhy

Organizer

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

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

Please join us for a Cerebral ALD Community Call facilitated by Jesse Torrey on Thursday, July 25th at 5:00 PM EDT for pre-, post-, and non-transplanted families. Please reach out to [email protected] if you have any questions. Register here: https://lp.constantcontactpages.com/ev/reg/f38awhz *Please note this call is for patients and caregivers only.  

Details

Date:
July 25
Time:
5:00 pm - 6:00 pm
Website:
https://lp.constantcontactpages.com/ev/reg/f38awhz

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, July 31st at 7:30 PM EDT for Newborn Screening, Young Families, and Parents of Asymptomatic Children. Please reach out to [email protected] with any questions. Register here: https://lp.constantcontactpages.com/ev/reg/94eddbd *Please note this call is for patients and caregivers only

Details

Date:
July 31
Time:
7:30 pm - 8:30 pm
Website:
https://lp.constantcontactpages.com/ev/reg/94eddbd

Organizer

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

Structured Community Call: Mental Health

Please join us for a topic-based Community Call focused on mental health, facilitated by Jesse Torrey, LAC. This month's call will be focused on "Navigating Change". The call will be held on Thursday, August 15th at 7pm EDT. Please reach out to [email protected] if you have any questions. You can register for the call using…

Details

Date:
August 15
Time:
7:00 pm - 8:00 pm
Website:
https://lp.constantcontactpages.com/ev/reg/93e2f89

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 20 de agosto a las 5pm EDT (hora UTC-4) / 18 hs de Argentina. Regístrese…

Details

Date:
August 20
Time:
5:00 pm - 6:00 pm
Website:
https://lp.constantcontactpages.com/ev/reg/58wn8mt

Organizer

Fundación Lautaro te Necesita y ALD Connect

Patient-Led Planning Committee (A.K.A. Workgroup 4)

Please join ALD Connect for a discussion about ALD events, programs, projects, and initiatives at a Patient-Led Planning Committee meeting. This meeting, also known as Workgroup 4, is a place for ALD patients and families to lead the way in brainstorming ideas and resources for the ALD community. This group operates on a drop-in basis,…

Details

Date:
August 21
Time:
7:00 pm - 8:00 pm
Website:
https://lp.constantcontactpages.com/ev/reg/c3fxj8h

Organizer

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

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

Please join us for a Cerebral ALD Community Call facilitated by Jesse Torrey on Thursday, August 22nd at 5:00 PM EDT 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/ergv83u.   *Please note this call is for patients and caregivers…

Details

Date:
August 22
Time:
5:00 pm - 6:00 pm
Website:
https://lp.constantcontactpages.com/ev/reg/ergv83u

Organizer

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

Community Call: Symptomatic Women

Please join us for a community call on Monday, August 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. You can register using the following link: https://lp.constantcontactpages.com/ev/reg/a778ykg   *Please note this call is for patients and caregivers…

Details

Date:
August 26
Time:
7:00 pm - 8:00 pm
Website:
https://lp.constantcontactpages.com/ev/reg/a778ykg

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, August 27th at 7 PM EDT for AMN men. You can register using the following link: https://lp.constantcontactpages.com/ev/reg/qz9zrzs *Please note this call is for men with AMN. If you are a caregiver who wants to support a son or partner…

Details

Date:
August 27
Time:
7:00 pm - 8:00 pm
Website:
https://lp.constantcontactpages.com/ev/reg/qz9zrzs

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, August 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. You can register using the following link: https://lp.constantcontactpages.com/ev/reg/e4thje4 *Please note this call is…

Details

Date:
August 28
Time:
7:30 pm - 8:30 pm
Website:
https://lp.constantcontactpages.com/ev/reg/e4thje4

Organizer

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

Community Call: Connecting Communities

Please join us for a 90-minute Community Call co-hosted by ALD Connect (US-based) and Alex TLC (UK-based) on Sunday, September 8th at 10am Eastern Daylight Time (UTC-4 Time)/ 3pm British Summer Time. Everyone in the ALD community is welcome to join. Reach out to [email protected] if you have any questions. Register here: https://lp.constantcontactpages.com/ev/reg/cp9f4dz

Details

Date:
September 8
Time:
10:00 am - 11:30 am
Website:
https://lp.constantcontactpages.com/ev/reg/cp9f4dz

Organizers

Alex TLC
ALD Connect

ALD Genetics 101 Webinar

Join us for a webinar titled "ALD Genetics 101", which will serve as both a refresher on basic ALD genetics and delve into more complex genetic topics. This webinar will feature genetic counseling student Felicity Emerson, Ph.D. The webinar will take place on Thursday, September 12th at 7pm Eastern Time. You can register using the…

Details

Date:
September 12
Time:
7:00 pm - 8:00 pm
Website:
https://lp.constantcontactpages.com/ev/reg/8h4b2be

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!