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The Full Hearts Program: Pediatric Rare Disease Patient Mentoring and Support

We have recently opened up sign-ups for the Full Hearts Program, an enrichment program open to all children where high school students will offer educational mentorship over Zoom. Patients can attend free zoom classes consisting of storytelling, arts and crafts, STEM/Humanities, music, and many more! Classes will last up to one hour and patients will …

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ERN-RND – MRI pattern recognition in leukodystrophies

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 …

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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 …

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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 …

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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 …

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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 …

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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. …

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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, …

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Global Genes LIVE! A RARE Patient Advocacy (un)Summit

Each year Global Genes convenes one of the world’s largest gatherings of rare disease patients, caregivers, advocates, healthcare professionals, researchers, partners and allies. Due to the COVID-19 global pandemic, and the threat this poses to the health and safety of our rare disease community, we are replacing this highly-anticipated event with the Global Genes LIVE! …

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2021 Pediatric Palliative Care WebinarsBeyond Words: Using Expressive and Integrative Therapies as Communication Tools

Children experience their world through play, creativity, and imagination. It is how they learn and process, and provides mastery over their environment. Play becomes all the more important when faced with adversity or trauma. In a medical setting, expressive therapies can be used to help children understand and process their illness and can even have …

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Global Genes LIVE! A RARE Patient Advocacy (un)Summit

Join us for a variety of interactive and educational events, meet-ups, workshops and networking opportunities. Here you’ll have the opportunity to connect and engage with others in the rare disease community, while experiencing the sense of community and belonging we’ve missed so much. Gain insights about the latest in rare disease innovations, best practices for …

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Bethanys Hope Foundation – The Dinner – Charity Gala

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/

ERN-RND – Adult leukodystrophies – early symptoms of late-onset leukodystrophies’​ by Fanny Mochel

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 …

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#PauseforTheGFPD

#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 …

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2021 Pediatric Palliative Care WebinarsBereaved Parents View on End-of-Life Care

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 …

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ERN-RND – Pelizaeus-Merzbacher disease and related disorders’ by Nicole Wolf

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 …

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2021 Pediatric Palliative Care WebinarsAlternative Payment Strategies to Enhance Access to Pediatric Palliative Care

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 …

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Knockout ALD: Run for ALD, Cure the Boys (5K/1 mile)

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

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