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Courageous Parents Network @courageousparentsnetwork.org · 5d

Join CPN next Thursday In The Room!

Learn more and register: courageousparentsnetwork.org/events/you-c...

Upcoming: You Can Never Be Too Prepared: Pediatric Disaster and Emergency Preparedness – Courageous Parents Network

Courageous Parents Network @courageousparentsnetwork.org · 13d

After years of listening and learning from rare families and clinicians, Courageous Parents Network is excited to announce the launch of an updated digital presence!!

Take a look around and let us know what you think! Email us at [email protected]
#pedpc #pedatrics #raredisease

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Courageous Parents Network @courageousparentsnetwork.org · 28d

Pediatric Palliative Care can make all the difference in families affected by #childhoodcancer. @courageousparentsnetwork.org has developed a guide on this topic to help educate families & providers. Click the link below & share!
English & Spanish
courageousparentsnetwork.org/guides/impro...

Improving the Pediatric Cancer Care Experience with Palliative Support

Palliative care offers invaluable support to children and their families, regardless of the prognosis, by focusing on enhancing quality of life while managing a

courageousparentsnetwork.org

Courageous Parents Network @courageousparentsnetwork.org · Sep 8

Are you a clinician attending Nexus Summit 2025?
CPN's @drchrissysalley.bsky.social, Eddie Day, & Naomi Williams will be presenting on how to incorporate CPN resources into communications & care. Join us for this virtual presentation on Sept 16th, 12:00 CDT.
summit2025.nexusipe.org/sessions/int...

Integrating Palliative Aware Care for Caregivers of Children Living with Serious Medical Conditions | Nexus Summit 2025

This session focuses on supporting families of children with serious medical conditions through palliative medicine principles. Participants will engage with Courageous Parents Network's digital tools...

summit2025.nexusipe.org

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Courageous Parents Network @courageousparentsnetwork.org · Sep 3

Join #ParentChampions Amy Graver and Aisling Melton with @drchrissysalley.bsky.social for a meaningful conversation about how palliative care can play an invaluable role in the care of a child with cancer. This event is hosted by CAC2 on September 11th. Register below.

www.cac2.org/cac2c-events...

CAC2 Webinar: Improving the Pediatric Cancer Care Experience with Palliative Support - CAC2

In this webinar, join pediatric psychologist, Chrissy Salley, Ph.D., with parents Amy Graver and Aisling Melton, to learn how palliative care can help your child and family and also demystify common m...

https://www.cac2.org/cac2c-events/cac2-webinar-improving-the-pediatric-cancer-care-experience-with-palliative-support/"

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Courageous Parents Network @courageousparentsnetwork.org · Sep 2

Where the CPN team will be this month!
#pedpc #NeuroJourney #Caregiver

Courageous Parents Network @courageousparentsnetwork.org · Aug 9

NEW! @Courageous Parents Network is now offering #continuingmedicaleducation hours for eligible #InTheRoom events--at no cost through June 2026. Check out the CPN #InTheRoom page for details and to register!

CPN | Events

Empowering parents and families of children living with serious illness. You are not alone.

buff.ly

Reposted by Courageous Parents Network

CAPC @capcpalliative.bsky.social · Aug 4

We are excited to announce that the 2025 CAPC Innovation Award will be presented to Blyth Lord, EdM, Founder & Executive Director of @courageousparentsnetwork.org, in recognition of her work driving transformative change in the care of infants, children, & adolescents living w/ a serious illness.

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Courageous Parents Network @courageousparentsnetwork.org · Jun 25

70% of stress related to a well-planned trip occurs in the preparation phase, so let us help guide you along.
courageousparentsnetwork.org/guides/trave...

Travel Guide

Traveling with a child with medical complexity can be challenging but with extra planning, a family vacation can be a memorable and enjoyable experience. Planni

courageousparentsnetwork.org

Courageous Parents Network @courageousparentsnetwork.org · Jun 24

Announcing the 2025 CPN Courageous Provider Award recipient Camara van Breemen, MN, NP at Canuck Place Children’s Hospice, Vancouver, CA! We celebrate you along with colleagues who reached out to recognize you.

Learn about Camara van Breemen & the Award: courageousparentsnetwork.org/pages/the-co...

Courageous Parents Network @courageousparentsnetwork.org · Jun 16

Support CPN while also running the ICONIC Falmouth Road Race on Cape Cod!

If you are interested in joining Team CPN or would like more details, please contact Team Captain Sarah Casey at [email protected]

We look forward to hearing from you!

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Courageous Parents Network @courageousparentsnetwork.org · Jun 11

Making major decisions about interventions such as feeding tubes or tracheostomies is one of the greatest responsibilities caregivers face. Join a panel of experienced parents as they share valuable insights into their decision-making journeys.

courageousparentsnetwork.org/events/paren...

Parent Perspectives: Insights into Medical Decision-Making

<p>Making major decisions about interventions such as feeding tubes or tracheostomies is one of the

courageousparentsnetwork.org

Courageous Parents Network @courageousparentsnetwork.org · May 21

Every parent wants to help their child be their best, regardless of their abilities. However, the education system and the process of setting #IEP goals can feel defeating when a child is #medicallycomplex.

courageousparentsnetwork.org/blog/please-...

Please Presume Competency

Every parent wants to help their child, regardless of their abilities be their best. However at times the education system and IEP goals do not presume competency.

courageousparentsnetwork.org

Courageous Parents Network @courageousparentsnetwork.org · Apr 6

Dr. Goldstein was one of the founding inspirations for CPN & our conviction of what is possible between a child's physician & parents who share the privilege and responsibility of their care. Help honor #ThisSharedJourney with a gift to our anniversary campaign. Visit buff.ly/I8xPjDh

Courageous Parents Network @courageousparentsnetwork.org · Apr 5

At CPN, we know that hearing from others with similar experiences helps build a vocabulary that strengthens caregivers' confidence.
Celebrate #ThisSharedJourney and honor the ongoing support we provide to our network by sharing the lived experiences of families and clinicians.
Give: buff.ly/RJj9adu

Courageous Parents Network @courageousparentsnetwork.org · Apr 3

CPN's mission has always been to help those caring for children with serious medical conditions feel less alone. #ThisSharedJourney celebrates how families and clinicians can positively impact each other when we share our stories and build community.

Support CPN: www.every.org/courageous-p...

Courageous Parents Network @courageousparentsnetwork.org · Mar 13

In this webinar from @pedpalcc.bsky.social, the presenter will discuss their experience with their clinic’s 6-year history of using medical cannabis for children with palliative care needs.
tfaforms.com/4842636

If you wish to participate in any of our upcoming webinars, please complete the registration form below. Those registering for 4 or more webinars will receive a 25% discount. Discounts are also available for groups of 5 or more.

tfaforms.com

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Courageous Parents Network @courageousparentsnetwork.org · Mar 11

Healthcare advance directives can support a family's goals and wishes. Join Founders of Advance Conversations IN THE ROOM on 3/24 at 8 p.m. ET
Register: courageousparentsnetwork.org/events/suppo...
#advancedirective #pedpc

Courageous Parents Network @courageousparentsnetwork.org · Feb 21

Today we recognize the strength and love of #caregivers.

Courageous Parents Network @courageousparentsnetwork.org · Feb 20

NOMINATIONS FOR THE CPN COURAGEOUS PROVIDER AWARD 2025 ARE NOW OPEN!

The deadline for submissions is Wednesday, April 30, 2025 at 5 pm ET. You can find instructions and a simple form to complete here: courageousparentsnetwork.org/pages/the-co...
#pedpc

The 2025 Courageous Provider Award: Nominations are OPEN!

The Courageous Provider Award annually recognizes clinicians providing exceptional family-centered care in circumstances of serious childhood illness. Nominees

courageousparentsnetwork.org

Reposted by Courageous Parents Network

UMass Chan Medical School @umasschan.bsky.social · Feb 10

🎧 Now streaming: Rare Diseases, Real Stories, a podcast that shines a spotlight on families affected by rare diseases: direc.to/msP4

#RareDiseasesRealStories #RareDiseases #podcast #RareDiseaseMonth @courageousparentsnetwork.org @blugenesfdn.bsky.social @globalgenes.bsky.social

Graphic says Rare Diseases, Real Stories, a UMass Chan Medical School podcast. All episodes streaming now on umassmed.edu and wherever you get your podcasts

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Courageous Parents Network @courageousparentsnetwork.org · Feb 13

We know the impact caring for a child with a serious illness can have on relationships.

So we want to know...
How do you tend to your relationships? What works? What doesn't work? What do you worry about? How do you keep it going?

Tell us in ONE word.
#pedpc #rare #caregiver

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Courageous Parents Network @courageousparentsnetwork.org · Feb 11

CPN is proud to be an official liaison to the American Academy of Pediatrics Section for Hospice & Palliative Medicine. Bringing peds experts & caregivers together is an essential part of improving the pediatric healthcare experience & fostering an understanding of clinician & caregiver perspectives

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Courageous Parents Network @courageousparentsnetwork.org · Feb 10

CPN’s Blyth and Jennifer teamed up for an appearance on the newly released podcast, Rare Diseases, Real Stories, brought to us by the team at @umasschan.bsky.social.

www.umassmed.edu/news/raredis...
#RareDiseases #podcast #RareDiseasesRealStories

Courageous Parents Network

www.umassmed.edu

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Courageous Parents Network @courageousparentsnetwork.org · Feb 7

This webinar from @pedpalcc.bsky.social will highlight the role of integrated behavioral health on a pediatric palliative care team and the applications/implications for a pediatric palliative care social work practice. Register: tfaforms.com/4842636
#pedpc #PPC

If you wish to participate in any of our upcoming webinars, please complete the registration form below. Those registering for 4 or more webinars will receive a 25% discount. Discounts are also available for groups of 5 or more.

tfaforms.com

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