The annual CPN Courageous Provider Award honors a provider who has made an outstanding contribution to the care of children with serious medical conditions. Nominations for the 2025 Award close Wednesday, April 30th. More details https://bit.ly/4bzBIpR
Courageous Parents Network
医院和医疗保健
Newton，MA 2,398 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
Partnerships at Box | Tech, Future of Work & Education | Stanford MBA | ex-McKinsey Manager
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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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One of the many difficult tasks parent caregivers face is speaking with their child about prognosis - whether it be related to long-term issues affecting quality of life or the possibility of death. We have developed a new guide to help validate caregivers' worries and to also empower them to have these conversations. After reviewing this Guide caregivers will be able to: ? Describe the potential benefits of speaking with their child about their prognosis ? Adopt strategies for raising conversations about prognosis with their child ? Identify resources to support you in speaking with their child https://bit.ly/4i1LTGr
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It is not uncommon for caregivers of medically complex children to encounter situations where their decision making style differs from that of the clinician. This infographic offers strategies to keep the conversation constructive and find a path forward. #shareddecisionmaking #raredisease #medicallycomplex
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Thank you to UMass Chan Medical School for this opportunity to share CPN with your listeners.
?? Listen to learn how the Courageous Parents Network empowers and supports parents whose children are diagnosed with rare diseases: https://direc.to/mNf9 “Everything we do is designed to equip, orient and quietly protect parents from things that can make a very difficult thing more difficult,” Blyth Taylor Lord said on the Rare Diseases, Real Stories podcast. All episodes of this UMass Chan Medical School-produced podcast are streaming now. #RareDiseasesRealStories #RareDiseases #podcast #RareDiseaseMonth #RareDisease RARE Revolution Magazine
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Today in honor of #RareDiseaseDay we are so thrilled to share an Amgen #RAREis video from mother and son team, Jennifer Siedman and Noah Siedman. We love their responses, "Rare is Courage Everyday” and “Rare is Coming Together." Tell us in one word what RARE IS for you? Amgen BDSRA Foundation Global Genes Stuart Siedman
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The U.S. House of Representatives will be voting on a bill this week that directs a congressional committee to make cuts of at least $880 billion (!!!) to Medicaid — such drastic cuts would have life-altering consequences (financial, educational, psychological, and emotional) for those caring for a child (or any loved one) with medical complexity. Congress must hear from you now. This petition is open to EVERYONE – caregivers, clinicians, friends – who cares about the well-being of children and their families. Use your voice to protect families. The Network of Community Options and Resources (ANCOR) has created an easy-to-use tool that takes only a few minutes to use. Check it out: https://bit.ly/4bhAHmq #raredisease #medicallycomplex
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Courageous Parents Network’s Director of Community Engagement, Jennifer Siedman will be a speaker at the American Society of Gene & Cell Therapy's (ASGCT) Empowering Patients 2025: A Cell and Gene Therapies Summit in March. Jennifer will be joined by Megan Maack Chief Executive Officer at the Childhood Dementia Initiative for the “Exploring Goals of Care and Personal Values when Considering CGT Trials” session on March 13th. Jennifer and Megan, both parents of children with Sanfilippo Syndrome were instrumental in bringing forward a gene therapy for the disorder. The pair will discuss the burdens families often experience as drivers of research and the tricky balance of hope and expectations in clinical research. Jennifer will highlight CPN’s resources to support clinical trial consideration by families. The Empowering Patients 2025 summit is an inaugural digital event on March 12 and 13, 2025. Attendees will hear from experts in the CGT field and patient advocacy group leaders. They will also have opportunities to ask questions and deepen their knowledge of the community’s CGT journey. Registration for ASGCT’s Empowering Patients 2025 is free. See the full agenda and/or register: https://bit.ly/41mrp5c
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NOMINATIONS FOR THE CPN COURAGEOUS PROVIDER AWARD 2025 ARE NOW OPEN! The nomination process is open to all who work with and/or are cared for by clinicians: patients, their families and friends, and pediatric providers of every specialty from primary care to music therapist. We invite you to consider nominating a clinician who possess outstanding qualities in - Providing exceptional family-centered care - Demonstrating compassion and empathy - Providing guidance and support - Collaborating with other pediatric specialists The deadline for submissions is Wednesday, April 30, 2025 at 5pm ET. You can find instructions and a simple form to complete here: https://bit.ly/431W9tl
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Anticipating the birth of a child can be one of the happiest times for parents. But when babies have life-threatening medical issues and begin their lives in the NICU, everything can change. Join Dr. Monica Lemmon and several experienced NICU parents, for a discussion about strategies to build helpful parent-clinician alliance and parental confidence in decision-making for the newborn in the NICU. https://bit.ly/4b2Wy0E
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Give a listen (18 minutes): Grief in Brief podcast host Ken Barringer refers to CPN as a roadmap for parents grieving a serious diagnosis for their child. Founder Blyth Lord locates CPN's origin and how, in 10 years, it has become the "What to Expect" - giving parents the language for what they're experiencing and for asking for what they need https://apple.co/41aBaDu #griefinbrief #diagnosis #courageousstories