The Yaya Foundation for 4H Leukodystrophy – Zoom Hangout for #4HLFamilies
Please join us for a #4HLFamilies Zoom Hangout. To attend, please email christina@yayafoundation4HL.org for an invite with the Zoom link. We look forward to getting together!
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ALSP Community Support Group Meeting
VirtualSister's hope Foundation presents - ALSP Community Support Group Meeting (Guest Speaker: Cynthia Beers, – Owner at Red Head Yoga, Author of Mindful Yoga for Teen Anxiety & Mindful Yoga for Adult Anxiety) https://sistershopefoundation.com/events/caregiver-support-group-meeting-3/
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Siblings of Leukodystrophy
VirtualAlex and Liam Chapleau have a brother, Aiden, who is affected by MLC. The goal of this webinar is to explore how siblings, and the family unit as a whole, are impacted by the challenges faced by a leukodystrophy diagnosis. This session is not just for siblings; all are welcome to attend and participate. The …
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: AMN Men
January 25 @ 7:00 pm - 8:00 pm EST Please join us for a community call facilitated by Ken Dieffenbach and Justin DAgostino 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: 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 OSullivan 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 …
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ULF Support Group – Women with AMN
VirtualA free discussion for Women who are carriers of the ALD/AMN gene and are symptomatic, or asymptomatic. Lead by two women who are carriers and affected by AMN. This session WILL NOT be recorded. Wednesday, January 26th, 7 PM Central Register here: https://bit.ly/32Z94j5
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ULF Support Group: Spouses of Affected People
VirtualAn open discussion for spouses of people affected with leukodystrophies. This session IS NOT recorded. Register here: https://bit.ly/3t5cLym
ALD Connect: Community Call: ALD Parent and Caregiver Support
February 6 @ 2:00 pm - 3:00 pm EST Please join us for a new community call facilitated by Jillian Smith and Katie Mullen on Sunday, February 6th at 2PM EST for all ALD Parents and Caregivers. Parents and caregivers of children with any ALD phenotype (Newborn Screening diagnosis, cerebral ALD etc.) are welcome to …
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ULF Webinar: Supporting and Advocating for your Child with an IEP
VirtualUnfortunately, our webinar about Advocating and Supporting for Your Student with an IEP, originally scheduled for this upcoming Wednesday, needs to be rescheduled. We are working with the speaker to determine a new date. When we have a new date chosen, we will notify you by email. You will not need to re-register for the …
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Rare Disease Day
Rare Disease Day is an observance held on the last day of February to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families.
ALSP Awareness Month
ALSP Awareness Month
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ULF Support Group: Parents of Affected People
VirtualThis is a session for parents of people affected by leukodystrophies, often their caregivers. This session WILL NOT be recorded. Time Mar 30, 2022 07:00 PM in Central Time (US and Canada) Parents of Affected Children, Register here: https://bit.ly/3qZlWxS
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ULF Support Group: Newly Diagnosed
VirtualAn open discussion for families who recently received their leukodystrophy diagnosis. No topic is off limits and we encourage participation at the attendees comfort level. This session WILL NOT be recorded. Time Mar 30, 2022 07:00 PM in Central Time (US and Canada) Adults and Newly Diagnosed Families, Register here: https://bit.ly/3Ga88Xu
Webinar: ‘Basal ganglia diseases in childhood’ by Belén Perez Dueñas
VirtualJoint webinar series by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN). The speaker is a Specialist in Pediatric Neurology at Vall d'Hebron University Hospital and Principal Investigator in Pediatric Movement Disorders at the Vall d'Hebron Research Institute. Her work aims to improve …
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ULF Webinar: Rehabilitation and Mobility Equipment
Virtual***CANCELLED*** Rehabilitation and Mobility Devices, presented by speakers from Children’s Healthcare of Atlanta Apr 27, 2022 07:00 PM in Central Time (US and Canada) Register here: https://bit.ly/3334ujQ
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/
What Patients Can Expect in a Gene Therapy Clinical Trial
The ASGCT Pre-Meeting Workshop What Patients Can Expect in a Gene Therapy Clinical Trial, is taking place on Sunday, May 15 from 1 - 5pm ET in Washington, DC. The workshop is intended for a patient/caregiver/advocate audience to learn more about this process. We hope you will join us for this educational opportunity. There are …
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ASGCT 25th Annual Meeting
The American Society of Gene and Cell Therapy’s (ASGCT) Annual Meeting, celebrating its 25th year in 2022, is the premier event for professionals in gene and cell therapy. The four-day meeting—and one preceding day of Pre-Meeting Workshops—is the best place for people in the field to learn from the latest scientific research, stay up to …
Webinar: ‘Mitochondrial leukodystrophies’ by Anna Ardissone
VirtualEducational webinars on rare neurologicial, neuromuscular and movement disorders jointly organized by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN). The speaker is Child Neurologist at the Institute of Neurology Carlo Besta, Milan, Italy. Time May 24, 2022 03:00 PM in Amsterdam, Berlin, …
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ULF Webinar: What to Expect at the 2022 ULF Family Conference
VirtualThis webinar is geared towards families who have not yet attended a ULF Family Conference. We will cover the basics of what to expect - travel tips, what to do when you get to the hotel, how to check in, what is included in your registration, what to expect during the sessions, and tips on …
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2022 RARE Drug Development Symposium
The Rare Drug Development Symposium, in partnership with the Orphan Disease Center of the University of Pennsylvania, brings together rare disease advocacy leaders and researchers to identify barriers to research, envision solutions, and accelerate progress for our communities. This two-day, in-person-only summit offers a unique opportunity to engage in interactive small-group workshops with experts and …
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2022 ULF Scientific Symposium
Eaglewoood Resort & Spa 1401 Nordic Road, Itasca, IL2022 Scientific Symposium Join us at the Eaglewood Resort and Spa on Thursday, June 23rd! The Scientific Symposium is back in-person! We are thrilled to be hosting at the Eaglewood Resort and Spa again this year, and we cannot wait to see you! For more information please visit https://ulf.org/news/scientific-symposium/
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2022 ULF Family Conference
Eaglewoood Resort & Spa 1401 Nordic Road, Itasca, IL2022 Family Conference Join us at the Eaglewood Resort and Spa on Friday and Saturday, June 24th and 25th! It’s official – the ULF Family Conference is back in-person! We are thrilled to be hosting at the Eaglewood Resort and Spa again this year, and we cannot wait to see you! Registration is now open! …
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2022 Tribute Gala: Honoring Ann Moser
Eaglewoood Resort & Spa 1401 Nordic Road, Itasca, ILJoin us at the Eaglewood Resort & Spa in Itasca, IL, USA. Cocktail hour begins at 5:30 PM — Dinner served at 6:30 PM Program and Auction to follow For more information please visit https://ulf.org/news/mosergala/