ALD Community Calendar

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

Please join us for a community call facilitated by Tara Meady, Suzanne Flynn, and Kathleen O’Sullivan Fortin on Wednesday, March 31st at 7:30 PM Eastern Time 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=a07ehoxfi0nbf0bb896 **NOTE: Please do not…

Details

Date:
March 31, 2021
Time:
7:30 pm - 8:30 pm
Website:
http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ehoxfi0nbf0bb896

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 Tuesday, April 6th, 2021 at 8 PM Eastern Time 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=a07ehoxfig4cf34398e **NOTE: Please do not register for this call unless…

Details

Date:
April 6, 2021
Time:
8:00 pm - 9:00 pm
Website:
http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ehoxfig4cf34398e

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, April 26th at 7 PM EDT for symptomatic women facilitated by Kathleen O'Sullivan-Fortin and Janis Sherwood. This call will include a guest appearance by neurologist Dr. Ali Fatemi from Kennedy Krieger Institute who will answer questions. Please reach out to [email protected] if you have any questions.…

Details

Date:
April 26, 2021
Time:
7:00 pm - 8:00 pm
Website:
http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ehva0wyg3f95fdd0

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 Tim Maguire, Ken Dieffenbach, and Justin D’Agostino on Tuesday, April 27th at 7 PM EDT 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=a07ehva1o82cae81d1f **NOTE: Please do not register for this call unless you…

Details

Date:
April 27, 2021
Time:
7:00 pm - 8:00 pm
Website:
http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ehva1o82cae81d1f

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 Tara Meady, Suzanne Flynn, and Kathleen O’Sullivan Fortin on Wednesday, April 28th at 7:30 PM Eastern Time for Newborn Screening, Young Families, and Parents of Asymptomatic Children. Please reach out to [email protected] with any questions. Please use the following link to register: http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ehva2e6682b10441 **NOTE: Please do…

Details

Date:
April 28, 2021
Time:
7:30 pm - 8:30 pm
Website:
http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ehva2e6682b10441

Organizer

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

Bootcamp: Newborn Screening and Non-Cerebral

ALD Connect will be hosting four Bootcamps in 2021. These will be half-day virtual meetings. Each will consist of four webinars and an Ask the Experts session. Register here. 11:00 AM EDT Standards of Care, Assessments 12:00 PM EDT Crucial Conversations 1:00 PM EDT Mental Health and Impact on Relationships and Families 2:00 PM EDT…

Details

Date:
May 1, 2021
Time:
11:00 am - 4:00 pm

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 Tuesday, May 4th, 2021 at 3:30 PM Eastern Time (UTC-4 time) for pre-, post-, and non-transplanted families. *Please note the time of this call differs from past calls.* Please reach out to [email protected] if you have any questions. Please use the…

Details

Date:
May 4, 2021
Time:
3:30 pm - 4:30 pm
Website:
http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ehwfw9uw03444aaa

Organizer

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

WorkGroup 4 Meeting

Please join your fellow ALD Patients, Families, and Advocates for the Monthly WorkGroup 4 Meeting to be held THURSDAY, MAY 20th, 2021 at 7-8pm EDT (UTC-4 Time). Bring your ideas and willingness to discover ways that we can work together to help advance our ALD community goals. Please register using the following link: http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ehzkycdzb3a043da

Details

Date:
May 20, 2021
Time:
7:00 pm - 8:00 pm
Website:
http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ehzkycdzb3a043da

Organizer

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

Bootcamp: Cerebral ALD

ALD Connect will be hosting four Bootcamps in 2021. Register here: http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ehz9y6i6e3967965 Cerebral ALD Bootcamp (May 22, 2021) 11:00 AM Transplant 101: BMT and Gene Therapy 12:00 PM Session 2: Preparing Your Family for Transplant 1:00 PM Session 3: Life After Leaving the Hospital 2:00 PM Session 4: Taking Care of the Caretakers 3:00 PM…

Details

Date:
May 22, 2021
Time:
11:00 am - 4:00 pm

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, May 24th at 7 PM EDT for symptomatic women facilitated by Kathleen O'Sullivan-Fortin and Janis Sherwood. 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=a07ehzkrrb8adb05f1e   **NOTE: Please do not register for this call unless you are a…

Details

Date:
May 24, 2021
Time:
7:00 pm - 8:00 pm
Website:
http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ehzkrrb8adb05f1e

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 Justin D’Agostino on Tuesday, May 25th at 7 PM EDT for AMN men. 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=a07ehzkspwf06843dd0 **NOTE: Please do not register for this call unless you are a patient…

Details

Date:
May 25, 2021
Time:
7:00 pm - 8:00 pm
Website:
http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ehzkspwf06843dd0

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 Tara Meady, Suzanne Flynn, and Kathleen O’Sullivan Fortin on Wednesday, May 26th at 7:30 PM EDT (UTC-4 Time) 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=a07ehzktory4d53c2b8 **NOTE: Please do…

Details

Date:
May 26, 2021
Time:
7:30 pm - 8:30 pm
Website:
http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ehzktory4d53c2b8

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!