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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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2021 Pediatric Palliative Care WebinarsBig Pharma – Little People

Children with life-limiting conditions have complex, frequently-changing medication regimens. Medication information is complicated to relay and difficult for patients/families to understand. Education must be engaging and developmentally appropriate for the patient. Interdisciplinary teams should work together to combine the medication knowledge with excellent patient-focused communication skills. This session will walk through three complicated pediatric cases, …

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NTSAD’s Annual Family Conference

Every year, the Annual Family Conference is an unforgettable experience for rare families and the cornerstone of NTSAD’s compassionate and expert Family Support Services. The Conference provides affected adults and children, their families and caregivers including parents, partners, grandparents, and healthy siblings the rare opportunity to connect with people that truly understand; learn about latest …

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Virtual MPS Napa Race for a Cure

The National MPS Society’s Napa MPS Race for a Cure is here! Join us for our 5th Annual Event as we raise funds for the mission of the National MPS Society. Although COVID restrictions prevent us from participating in person, we’ll join together for this incredible event virtually. Register to participate, and on May 2nd …

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2021 Pediatric Palliative Care WebinarsTransition Planning for the Fully Dependent Child

Before a medically complex, fully dependent child turns 18 years old, parents need to make a mental shift to address the needs of the child as an adult. To continue making medical decisions for a fully dependent adult child, legal guardianship will need to be addressed. Also, the child’s medical care will likely need to …

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Tee It Up! For The GFPD 2021

Tee It Up! For The GFPD 2021 will take place in Normal, Illinois on May 21, 2021. This will be the fourth annual event held in honor of our son, Max Chapman, who was diagnosed in January 2015 with a very serious, ultimately fatal genetic condition called Peroxisomal Biogenesis Disorder (PBD). All proceeds from the …

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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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The RARE Drug Development Symposium

he RARE Drug Development Symposium is a two-day interactive event in partnership with The Penn Medicine Orphan Disease Center that focuses on educating both beginners and advanced participants on the drug development process. Here, all members of the rare disease community are encouraged to explore their role in the rare disease drug development process in …

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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 …

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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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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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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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