Are you newly diagnosed?

Bootcamp: Men with AMN

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/

ERN-RND – Update Metachromatic Leukodystrophy’​ by Samuel Gröschel and Ingeborg Krägeloh-Mann

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 …

ERN-RND – Update Metachromatic Leukodystrophy’​ by Samuel Gröschel and Ingeborg Krägeloh-Mann Read More »

11th European Conference on Rare Diseases and Orphan Products

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/

2021 Pediatric Palliative Care WebinarsIncluding and Supporting Siblings in Non-traditional, Multicultural Families

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 …

2021 Pediatric Palliative Care WebinarsIncluding and Supporting Siblings in Non-traditional, Multicultural Families Read More »

2021 ULF Scientific Symposium

Virtual

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 …

2021 ULF Scientific Symposium Read More »

2021 ULF Family Conference

Virtual

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 …

2021 ULF Family Conference Read More »

Living Rare, Living Stronger NORD Patient and Family Forum

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 »

2021 Pediatric Palliative Care WebinarsPediatric Concurrent Care: Research Update

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 »

Alex TLC Summer Event

Virtual

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

Sister’s Hope FoundationALSP Caregiver Support Group Meeting

Virtual

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/

Bootcamp: Women with ALD

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/

2021 Pediatric Palliative Care WebinarsIncreasing Sensitivity in Clinical Practice with the Transgender Population

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, …

2021 Pediatric Palliative Care WebinarsIncreasing Sensitivity in Clinical Practice with the Transgender Population Read More »

Sister’s Hope FoundationALSP Caregiver Support Group Meeting

Virtual

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 International GM1 Virtual Community Conference

Virtual

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 International GM1 Virtual Community Conference

Virtual

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

“Unlock CTX”

Virtual

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 International GM1 Virtual Community Conference

Virtual

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

RDLA September 2021 Webinar

Virtual

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

Lessons From the field

Virtual

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

Scroll to Top