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.Time: 11:00 am - 4:00 pm https://aldconnect.org/calendar/bootcamp-men-with-amn/
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). Samuel Gröschel is Senior Child Neurologist, at the Department of Neuropaediatricsat the University Hospital Tübingen. He is also deputy head of the …
Join Padma Gordon, an embodied mindfulness Counselor, for a morning of meditation and discussion every Tuesdays at 10 AM PST. The workshop typically begins with a short grounding meditation, followed by some journaling and then discussion of what spirituality means to you and the role it plays in your life. Padma is a non-denominational minister, …
Spiritual Self-Care Workshop with Padma Gordon [Online] Read More »
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.https://www.rare-diseases.eu/
nce again, we look forward to offering you the opportunity to learn from experts in your field, grow your professional network, and discover the latest best practices in neurology, all in the comfort of your home. Building on our experience from the EAN Virtual Congress 2020, we will utilise the very best technical solutions to …
7th Congress of the European Academy of Neurology Read More »
There are a myriad of constellations that make up a family…and, within each family, a unique identity of “sibling”, one that fiercely loves and walks alongside you regardless of the shared or unshared DNA. This webinar presents a unique case study through which participants will discover ways families identify their own family constellation and the …
Join Padma Gordon, an embodied mindfulness Counselor, for a morning of meditation and discussion every Tuesdays at 10 AM PST. The workshop typically begins with a short grounding meditation, followed by some journaling and then discussion of what spirituality means to you and the role it plays in your life. Padma is a non-denominational minister, …
Spiritual Self-Care Workshop with Padma Gordon [Online] Read More »
Click Here to View the 2021 Agenda (Subject to Change) The ULF is thrilled to be offering the Scientific Symposium virtually this year on Thursday, June 24th! Registration is now open – To register click here or learn more at here. Medical and industry partners who register for the Scientific Symposium are also automatically registered for …
Click Here to View the 2021 Agendas (Subject to Change) It is with an over abundance of caution that we will be hosting our annual Family Conference virtually again this year, Friday and Saturday, June 25th and 26th. Registration is open to all who wish to attend, at no cost. Donations are always welcome, but …
Join NORD for the Living Rare, Living Stronger NORD Patient and Family Forum, an interactive virtual event. Living Rare, Living Stronger is an annual patient-focused conference, providing patients and families with practical tools for living their best lives with rare diseases and opportunities to connect with each other, advocates and other stakeholders. This year’s Forum …
Living Rare, Living Stronger NORD Patient and Family Forum Read More »
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!
Until the Patient Protection and Affordable Care Act (ACA) was enacted ten years ago, there were two care choices for children given six months to live: continue treatment or cease treatment and enter hospice. The ACA added a third choice by mandating concurrent care be offered to Medicaid and Children’s Health Insurance Program (CHIP) patients. …
2021 Pediatric Palliative Care WebinarsPediatric Concurrent Care: Research Update Read More »
?Hunter's Hope Medical and Family Symposium is a time for leukodystrophy families, medical providers, newborn screening lab personnel, industry partners, and supports from around the world to gather for four days of learning and collaboration. They will be meeting virtually again this year due to COVID. This format allows attendees from all over the globe …
Join us for our virtual summer event on Tuesday 27th July from 14:00-15:30! Zoo2U will be hosting an animal encounter. Get ready to meet a variety of animals, including a Meerkat, Skunk, Blue Tongue Skink, Royal Python, Eclectus Parrot, Giant Millipede and a Scorpion! Contact suzanne@alextlc.org for more information
ALSP Caregiver Support Group Meeting (Guest Speaker: Angela Pontius – Senior Director, Clinical Operations & Patient Advocacy at Vigil Neuroscience) Join Zoom Meeting https://sistershopefoundation.com/events/caregiver-support-group-meeting-2/
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.Time: 11:00 am - 4:00 pm https://aldconnect.org/calendar/bootcamp-women-with-ald/
In clinical practice with the transgender and gender non-conforming population, a historically marginalized and mistreated population, it is vital for clinicians to practice from a place of awareness, education, and cultural humility. This presentation provides a strong foundation of knowledge for educated clinical interactions, including basic terminology, information about the disparities faced by this population, …
ALSP Caregiver 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/
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
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
Have you ever wished you could tell the people who research, develop, and regulate treatments for CTX what’s most important to you? You can! At the “Unlock CTX” Patient-Focused Drug Development Meeting. Now is your chance to help Unlock CTX.
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
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!
Once a month RDLA convenes via Zoom webinar to discuss legislation and developments that affect the rare disease community. https://everylifefoundation.salsalabs.org/SeptemberRDLAWebinar2021/index.html?eType=EmailBlastContent&eId=d72206af-3020-46b2-930d-338b045c683d
Genetic Alliance presents - Lessons from the field - In this webinar series, advocacy leaders and other experts share their experiences. This includes successes and failures, challenges and opportunities, and simply celebrating the good work that is happening all around us - in our field. https://us02web.zoom.us/meeting/register/tZcqf-CvrDwjE9I6kql3WX4wfcknSUyZNaDu
