ALD Community Calendar

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
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…

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…

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…

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, June 1st, 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 several past calls. Please reach out to [email protected] if you have any questions. Please register…

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 de ALD Connect en español! La llamada se llevará a cabo el 5 de junio a las 5 pm EDT (hora UTC-4) y será facilitada por Jean Cappello. Regístrese usando este enlace: http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ehzl14src20c03a9 **No se registre para esta llamada a menos que sea un paciente o un cuidador.…

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, June 8th, 2021 at 3:30 PM Eastern Time (UTC-4 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=a07ei3hfi8k34a32ad3 **NOTE: Please do not register for this…

Organizer

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

Bootcamp: Men with AMN

Please join us for our ALD Connect Bootcamp for Men with AMN on Saturday, June 12, 2021 from 11:00 AM-4:00 PM. The Bootcamp will consist of four webinars and an Ask-the-Experts session. We are finalizing topics and presenters. Our current tentative schedule is: 11:00 AM Standards of Care, Dr. Florian Eichler 12:00 PM Cerebral ALD,…

Details

Date:
June 12
Time:
11:00 am - 4:00 pm

Organizer

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

June Workgroup 4 meeting

Q: Are you ready to make a difference and help the ALD Community with outreach and education projects? Do you have ideas for resources that are missing or could be improved upon for patients and families with ALD? Are you curious how you might be able to advance a cure for ALD? A: JOIN US…

Details

Date:
June 17
Time:
7:00 pm - 8:00 pm

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, June 22nd 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=a07ei48ykecf41e87b8 ***NOTE: Please do not register for this call unless you are a patient…

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!