Viðburðir
Börn GI vandamál í DEEs
Come hear about GI issues such as reflux, feeding tubes, constipation, and more from pediatric GI doctor and KdVS dad Russ Zwiener. The discussion will be led by Kaci Fisher, a Koolen-de Vries Syndrome Foundation Board member and KdVS mom.
Inchstone Community Update Webinar
The tools that are currently being used to measure the progress of people with developmental and epileptic encephalopathies (DEEs) are not able to capture their small improvements, which could jeopardize trials of new disease-altering treatments. The goal of the Inchstone Project is to identify and develop measures that are sensitive to the small but important…
Flogaveiki Action Network Advocacy Update
Síðasta haust 2022 var nýtt hópur - Epilepsies Action Network (EAN) - hleypt af stokkunum til að þróa áætlanir um innlend stjórnvöld í samskiptum til að auka alríkisfjármögnun til rannsókna, þýðingar, umönnunar og lækninga við flogaveiki. Við fögnum ÖLLUM hagsmunaaðilum flogaveiki sem deila sýn okkar og hlutverki. Skráðu þig hér til að heyra voruppfærslur þeirra!
Lærðu hvernig á að hámarka gögnin þín með CRID
Taktu þátt í þessu 30 mínútna vefnámskeiði til að læra meira um Clinical Research ID (aka The CRID™), þjónustu sem gerir sjúklingum og foreldrum (og barni þeirra/börnum) sem taka þátt í klínískum rannsóknum tækifæri til að búa til sinn eigin einstaka alhliða sjúkling auðkenni til að nota í klínískum rannsóknum. Þetta CRID auðkenni er hægt að nota...
Að vernda sjaldgæfan aðgang að ómerktum meðferðum
Have insurance companies or Medicaid refused to cover critical prescribed treatments claiming they were off-label and not "medically necessary"? Is coverage denied because treatments that may work for you or your child are not on compendia - a compilation of evidence-based, off-label treatment options? Nearly half of chemotherapy drugs prescribed today are off-label but there…
Forrit til að hjálpa til við að sjá um flókin börn okkar - legudeildir og göngudeildir
Complex Care programs are primary care for children with complex chronic medical conditions, often with multiple diagnoses and dependent on technology (i.e. ventilator), tube fed, etc. This is a medical home for your child with clinicians who understand and work to help manage the complexity of your child's care. Additionally, complex care programs - both…
Sjaldgæf umönnun: Hvernig á að biðja um og þiggja hjálp
Join us for a discussion with rare caregivers about the challenges of self-care. People are fond of telling us we need to care for ourselves but that can often seem like a luxury when you are caring for a medically complex child. We will talk about ways that we both struggle with and have learned…
DEE-P samfélagsspjall
Join us for an opportunity to connect with other parents/caregivers and chat about our experiences raising children with DEEs/rare epilepsies. This will be the first of our monthly opportunities to connect via Zoom with other DEE caregivers. Once you register, you will be able to access any future meetings with the same link.
Beinheilsa fyrir DEEs
Join us to learn more about the brain - bone connection. We are still learning but both epilepsy and anti-seizure medications (ASMs) are associated with adverse effects on bone health. Those taking ASMs have increased rates of bone loss and other issues that may contribute to an increased risk of fracture. So what can we…
IEP hrunnámskeið
School is just around the corner for many. It's a good time to revisit the world of IEPs Erin Prosser, Rare Disease Mom and Certified Master IEP Coach, will join us to provide a Crash Course on how to prepare, what to consider, and what to expect in the process. We hope you can join…
DEE-P Umræða - Líf með ógreint DEE
Komdu með okkur þegar við ræðum upplifunina af því að eignast barn með ógreindan sjaldgæfan sjúkdóm. Við munum ræða mismunandi leiðir til að sigla um reynsluna, áskoranirnar og ávinninginn af tengingu og samfélagi.
DEE-P spjall
Vertu með okkur til að fá tækifæri til að tengjast öðrum foreldrum/umönnunaraðilum og spjalla um reynslu okkar af því að ala upp börn með DEEs/sjaldgæfar flogaveiki.
