Siblings of Leukodystrophy Led by Margaret McIntyre (VWM) An informal chat for the siblings of people affected by leukodystrophy. It will be moderated, but the discussion is open to anyone. Please note that this discussion will NOT BE RECORDED. You are free to participate at your comfort level, you will not be forced to answer …
The ULF is launching a monthly webinar series, and we need to hear from YOU! What topics would you like to learn more about? How can the ULF be more helpful to your family? What kind of resources are you in need of now? Or when you were newly diagnosed? We will take your suggestions, …
Your experience begins with our fabulous Cocktail Hour. You and your Guest(s) will be treated to amazing Action-Appetizer Stations featuring an all-star lineup of very talented local Chef’s. You will have the opportunity to peruse the awesome Silent Auction Tables as well as participate in our fantastic Raffles. https://bethanyshope.org/event/the-dinner/
Cure GM1 is extremely proud to present a virtual conference for the GM1 community and families, biotech professionals, academic researchers, and physicians. Cure GM1 is the only 501(c)(3) entirely dedicated to GM1 gangliosidosis patient advocacy and GM1 research. Our virtual conference will be a series of webinars throughout the month of September. https://registration.socio.events/e/gm1
Sister's hope Foundation presents - ALSP Community Support Group Meeting with Tanya Bardakjian, Genetics Counselor at the University of Pennsylvania Neurology Department * The Role of a Genetics Counselor as Part of the Treatment Team https://sistershopefoundation.com/events/caregiver-support-group-meeting-4/
Educational webinars on RARE neurological, 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 an associate professor of genetics at the University Pierre and Marie Curie (UPMC), Paris, France. Dr Mochel leads the …
#PauseforTheGFPD is our worldwide awareness day. Every year, on October 5th, the Global Foundation for Peroxisomal Disorders pauses to recognize and honor all of the families that have lost a child or are currently fighting a peroxisomal disorder. Show support by taking a moment to pause for individuals & families devastated by this disorder. Even …
Educational webinars on RARE neurological, 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 and researcher at the Hospital Bicêtre and the Institute of Brain and Spine in Paris, France. Her …
X-linked adrenoleukodystrophies – Update by Caroline Sevin Read More »
Each year, the NORD Summit, one of the largest multi-stakeholder events in rare disease, brings together participants spanning the rare community, including rare disease experts and leaders from patient advocacy groups, government, industry, and academia to discuss the most current and critical topics related to rare diseases and orphan products. https://nordsummit.org/
Global DARE Foundation is hosting a webinar presented by Professor Dr. Jean-Marc Nuoffer, MD from the University Hospital in Bern, Switzerland will discuss Phytanic Acid Analysis and Interpretation https://www.eventbrite.com/e/phytanic-acid-analysis-and-interpretation-lab-clinical-considerations-tickets-166358481697
Despite an increase in specialized pediatric palliative care programs there remain inadequacies in end of life (EOL) care for children. This presentation will review the perspectives of 28 Spanish- and English-speaking bereaved parents who detailed qualitative experiences about their children’s end of life care. Parents’ perspectives from the study highlight the importance of 1) supporting …
2021 Pediatric Palliative Care WebinarsBereaved Parents View on End-of-Life Care Read More »
While holidays often bring much joy, more and more they are blended with increased stress. Unrealistic expectations, negative thought patterns, and unhealthy coping can leave individuals with a sense of being overwhelmed and having no control. However, through the impact of psychoeducation about how the brain and body process stress, identifying stress impact through self-awareness, …
Educational webinars on rare neurological, 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 consultant child neurologist and associate professor at the Emma Children’s Hospital, Amsterdam University Medical Centres, the Netherlands.She is an expert …
ERN-RND – Pelizaeus-Merzbacher disease and related disorders’ by Nicole Wolf Read More »
Rachel Logan, Genetic Counselor, Children's Hospital of Atlanta will present on genetic testing for the leukodystrophies and a brief introduction on what gene therapy is. There will be an opportunity for questions at the end of the presentation. This meeting will be recorded and posted to the ULF's YouTube channel the day after the meeting. …
Sister's hope Foundation presents - ALSP Community Support Group Meeting https://sistershopefoundation.com/events/caregiver-support-group-meeting-5/
NTSAD’s goal is to provide opportunities for members of our NTSAD Community living near and far to engage, connect, bid Sue farewell, and above all else — support families. NTSAD relies on industry members, researchers, and rare allies to invest in our families’ futures through partnership, philanthropy, and support of our events. Consider sponsoring the …
NTSAD’s goal is to provide opportunities for members of our NTSAD Community living near and far to engage, connect, bid Sue farewell, and above all else — support families. NTSAD relies on industry members, researchers, and rare allies to invest in our families’ futures through partnership, philanthropy, and support of our events. Consider sponsoring the …
ALD Connect Virtual 2021 Annual Meeting and Patient Learning Academy on November 12 and 13, 2021!https://aldconnect.org/calendar/ald-connect-2021-annual-meeting-and-patient-learning-academy-virtual/
With the growing emphasis on value-based payments in healthcare, there is significant potential for enhanced access to pediatric palliative care services. This discussion will highlight the challenges to access of PPC services in traditional reimbursement models, and it will discuss existing state models that have been developed. Finally, a process for exploring policy and legislative …
Alex TLC Community Weekend on the 20th & 21st November, is designed to bring together sufferers of leukodystrophy and their families, alongside doctors, researchers and scientists from around the world to meet, learn and support one another over a weekend of talks and activities. Dr John Livingston will be joining to give his update about …
Knockout ALD organizes and hosts the Run for ALD, Cure the Boys 5K and a one-mile-walk event in Maryland Heights, Missouri, to raise money for the ALD Research Fund at the University of Minnesota. This year’s event will be in person and virtual, on November 20, 2021. Email Julie at runforALD@yahoo.com with questions. Website: www.knockoutald.com
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!
Sister'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/
Alex 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 …
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 …
