ALD Connect: Community Call: Symptomatic Women

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 info@aldconnect.org if you have any questions. Please use the following link to register: http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07eizzsb5y9fb04ad9   **Please do …

ALD Connect: Community Call: Symptomatic Women Read More »

ALD Connect: Community Call: AMN Men

January 25 @ 7:00 pm - 8:00 pm EST Please join us for a community call facilitated by Ken Dieffenbach and Justin D’Agostino on Tuesday, January 25th at 7 PM EST for AMN men. Please reach out to info@aldconnect.org 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 …

ALD Connect: Community Call: AMN Men Read More »

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

January 26 @ 7:30 pm - 8:30 pm EST Please join us for a community call facilitated by Suzanne Flynn, Tara Meady, and Kathleen O’Sullivan Fortin on Wednesday, January 26th at 7:30 PM EST for Newborn Screening, Young Families, and Parents of Asymptomatic Children. Please reach out to info@aldconnect.org with any questions. Please use the following …

ALD Connect: Community Call: Newborn Screening, Young Families, Parents of Asymptomatic Children Read More »

14th Congress of the European Paediatric Neurology Society (EPNS)

The EPNS Congress provides an opportunity to learn about the latest developments in the rapidly evolving field of child neurology, including basic science, diagnostic methods, and novel treatments. You can network with colleagues and industry partners all focused on delivering the best possible care for children with neurological disorders.https://epns-congress.com/

11th European Conference on Rare Diseases and Orphan Products

Virtual

The European Conference on Rare Diseases and Orphan Products is recognised globally as the largest, patient-led rare disease event in which collaborative dialogue, learning and conversation takes place, forming the groundwork to shape future rare disease policies. Please contact martina.bergna@eurordis.org for more information.

Hunter’s Hope 2022 Medical and Family Symposium

Holiday Valley Resort – Ellicottville, NY

The Hunter’s Hope Medical and Family Symposium is a time for Leukodystrophy families, medical providers, newborn screening lab personnel, industry partners, and researchers from around the world to gather for learning, sharing, and Hope.

Leukodystrophy Awareness Month

September is Leukodystrophy Awareness Month!  A leukodystrophy is a type of disease that causes degeneration of the myelin, or "white matter" of the brain.  Every individual requires healthy production of myelin for speed and accuracy of nerve impulses within the brain.  Without a healthy myelin sheath, your nerves can’t send and receive signals properly.

Scroll to Top