CPN sits at the critical intersection of parent/patients and clinicians providing resources that empower and equip both parents and providers. Available 24/7 these resources are free to parents, patient communities and clinicians. Your support makes that possible. Donate: https://bit.ly/49cgcWZ #ThisSharedJourney
Courageous Parents Network
医院和医疗保健
Newton，MA 2,132 位关注者
501c3/nonprofit & digital platform bringing resources to families & medical providers caring for seriously ill children
关于我们
CPN is a nonprofit organization that provides curated digital resources and programming to help caregivers navigate the illness journey with support and a sense of community. At the center of CPN are parent and clinician voices that illuminate and share the lived family experience, focusing on social, functional, and emotional needs and the positive impact of “palliative-aware” practices, regardless of diagnosis and without bias. CPN resources include video and podcast interviews, educational guides and learning path- ways, parent-generated blogs, and a clinician portal offering materials for use in self- and colleague education. CPN’s programming includes a robust social media presence, monthly educational webinars and newsletters and both live and virtual presentations to clinician audiences, biotech leaders, and patient organizations. CPN partners with others to bring the family perspective to clinical research and a wide range of communication (or media) outlets. CPN staff also presents at family and industry conferences, and at pediatric hospital Grand Rounds. For more information visit CourageousParentsNetwork.org and email us at [email protected]
- 网站
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https://courageousparentsnetwork.org/
Courageous Parents Network的外部链接
- 所属行业
- 医院和医疗保健
- 规模
- 2-10 人
- 总部
- Newton，MA
- 类型
- 非营利机构
- 创立
- 2014
- 领域
- rare disease、pediatric、palliative care、family support、rare disease、caregiver、sibling support、neurodegenerative、clinical education、special needs、clinical trial、resiliency、anticipatory grief、parent bereavement、parenting、parenting、feeding tube、decision making、Tracheostomy、pediatric palliative care、psycho-social、physician resources、well-being、nonprofit和spinal fusion
地点
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主要
获取路线
US，MA，Newton
Courageous Parents Network员工
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Kate Tighe
VP, Head, US Public Affairs & Patient Advocacy - Immunology
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Jonathan Sands
Business Operations & People Leader | Tech, Future of Work, Education, Healthcare | Stanford MBA
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Alison Me
Development and Communications Associate at Courageous Parents Network
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Lindsey Topping-Schuetz
Advocate for children with disabilities.
动态
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THIS is exactly why Courageous Parents Network exists. We appreciate this piece from The New York Times written by Sarah Wildman which describes an unfortunate experience that many parents of children with serious medical conditions encounter. She encapsulates the essence and nature of some of the problems - veiled communication, lack of emotional support for the family, and palliative care delivered too little/too late - and how all of this negatively impacts families. Our resources - always free and available 24/7 - include digital resources in different formats. These are designed for parents to: - educate and inform them so that they can have honest information and become more equipped to navigate a complicated medical system; - access tools to empower them to advocate for treatments that reflect what matters most to their family; - make the best decisions they can with less regret. We help parents understand why and how palliative care, from the start, can help and how to advocate for it as part of their child’s care. CPN also provides live programming to deliver education and training to both parents and clinicians. The?programming is designed with both parents and clinicians delivering the information. We know that if the care experience is to be improved, then all of it - the care, the resource development, and the education - must be done by and for parents and clinicians. It is truly a shared journey. https://lnkd.in/dZK8DaF3
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Our small but mighty team (from NY, ME, and MA) came together last week for our final in-person team meeting of 2024 to discuss what inspires us and our activities for 2025. It's always good to have the opportunity to meet live! #ThisSharedJourney Blyth Lord Jennifer Siedman Chrissy Salley, Ph.D. Alison Me Devin Rojas Carol Trager Ashley Hill Zachary Brewer Claire Mills
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Every individual, including children, experiences loss in their own way. Research has shown that despite seemingly overwhelming grief and the lifelong impact of loss, each of us has the capacity to integrate the loss over time, and that children are very resilient. This guide will help you tend to a grieving child. #siblings #loss #grief
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We want to give a big shout-out to our first class of Parent Champions who "graduate" tonight. These 6 exceptional parents have grown the CPN network through presentations to clinicians and patient organizations across the United States. We are eternally grateful for all their efforts. Learn more about them: https://bit.ly/3YWVqpF Ashley Waddell Tingstad Aubrey McKenzie Jones, Ph.D. Maria Hopfgarten Parvathy Raman Krishnan
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What a treat to meet the huge, gorgeous Palliative and Complex Care teams and clinicians at UPMC Children's Hospital of Pittsburgh and present Carol May, RN (the founding force behind this Division at the hospital) with the Ilene Beal Foundation 2024 Courageous Provider Award. #pedpc
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A story has the power to change lives. #ThisSharedJourney is truly about how the stories of others help to orient, equip and empower caregivers and clinicians. Courageous Mom Caryn Anthony found strength in knowing that "everything [she] learned by the seat of [her] pants" would live on and help others through her blogs. Help us bring more stories to more families: https://bit.ly/4hTY6NC
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Genetic testing has the opportunity to bring answers to caregivers of children with medical complexity. Navigating insurance coverage can be a barrier. We are excited that our partners at Child Neurology Foundation have developed this webinar.
?? Exciting News: We're launching Navigating Insurance for Genetic Testing, a 3-part webinar series aimed at easing the challenges of insurance coverage for genetic testing. Episode 1: Understanding Your Insurance will guide you in decoding your policy, organizing your paperwork, and understanding key terms. Future episodes will cover the appeals process and share resources to help you navigate this complex journey with confidence. Stay tuned for dates and join us in this empowering series. #GeneticTesting #WebinarSeries #InsuranceSupport #CNFCommunity #childneurology
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Pediatric Psychologist | Director, Clinician Engagement @ Courageous Parents Network | Caregiver Mental Health Advocate
A big shoutout to the team at Dear NICU Mama who produces a wonderful podcast for their community. I was thrilled to join them along with parent caregiver, Naomi Williams, for this interview. Thank you for using your platform to share how pediatric palliative care can help support families in the NICU as they advocate and make decisions for their baby. Naomi is in her 15th year as a mom to child living with medical complexity and brings a powerful and hopeful perspective. I hope you will listen. #pedpc #caregiverwellbeing #NICU #pediatrics
S9 E9 | What is Palliative Care with Courageous Parents Network — Dear NICU Mama
dearnicumama.com
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When parents don't know where to go or what to expect, CPN is there to guide them. Through the voices of parents who have been there, and the clinicians who care for families of medically complex children, CPN's resources offer a safe place to explore decisions, find guidance and help families know good days. Our #10for10 campaign reflects our commitment to travel this road with them by offering essential online resources and a compassionate community. Join us in celebration of the strength of families and CPN's 10th anniversary. Donate: https://bit.ly/40MZM5k #ThisSharedJourney #CourageousParentsNetwork
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