It is #NationalSiblingDay . The diagnosis of a brother or sister will be a defining moment in the life of a #sibling . In her first piece as Blogger in Residence, Molly's words truly capture the sibling experience.
Read: bit.ly/3vOuy0G
#RareSiblings
#Cancer

Discover the power of children's #books to help young people understand #death and #loss . REGISTER: bit.ly/3J6nz6p
#teachers
#libraries
#caregivers
#pedpc
#parenting
#grief
#bereavement

Studies have shown that even very young children who are #seriouslyill think about death—even if no one is talking about it. If a child is cognitively capable of talking about their own wishes, it can be a gift to all to have these conversations together.
bit.ly/3TXxbGF

Children’s literature can offer a gentle and developmentally appropriate way to address complex topics – such as #death and #grief – with children. Join us In The Room on April 11th.
Register: bit.ly/3J1QB6S
#Pedpc #RareDisease #Caregiver #MedicallyComplex

'As with most types of death, perinatal loss is not spoken about openly. It goes against our expectations. Parents should not have to bury their children. Yet, it is a painful truth for thousands of families every year.' Frances McCarthy, MS, RNC-NIC, CPLC
bit.ly/43FMhUy

#RareDisease
#CareAboutRare
#RareSiblings

Caregivers of children with serious medical conditions uniquely understand living in the present.
#Trisomy18
#TrisomyAwarenessMonth
#Pedpc
#Trisomy21
#trisomy13
#CompatibleWithLife

Join us In the Room tonight at 8 pm ET for a conversation about work, in or out of the home, while caregiving. REGISTER: bit.ly/3v25kM1
#parentcaregiver
#caregiver

Join us for a discussion with Myra Sack, author of Fifty-Seven Fridays: Losing Our Daughter, Finding Our Way. This memoir honors Myra’s daughter Havi and chronicles their journey helping her live and die.
bit.ly/3TnBBoN
#Ritual #Diagnosis #Grief #PalliativeCare

In her most recent #blog , Jessica discusses the many reasons why she continued to #work after her daughter Dalia's diagnosis. Read: bit.ly/3x03RXe
Join a panel of parents on 3/19 at 8pm ET to explore the many facets of work
Register: bit.ly/3PmPNwZ
#Caregiver

Today is #BostonMarathonGivingDay , and we are so excited to share that one of our own will be running this year for CPN! If you are interested in hearing more of Claire’s story or supporting her run, visit her fundraising page: bit.ly/3v2MULb
Boston Marathon

Join us In The Room on 3/19 at 8 pm ET for a panel discussion on working while caring for a medically complex child.
Register: bit.ly/3wRiwnk

Caregivers of children with serious health conditions are burdened with many “what ifs” and worries. Pediatric palliative care providers are prepared to help respond to ANY questions.
bit.ly/3ValwFI
#PalliativeCare #Pedpc #Caregiver

Caregivers of children with serious medical conditions uniquely understand living in the present.
#trisomy #trisomy awarenessmonth #compatiblewithlife #caregiver

States are reducing or eliminating paid family caregiving. Where does that leave parent caregivers?
nyti.ms/43knUvD
#caregivers
#burden
#caregiving '

Our Jennifer Siedman participated in this roundtable to discuss some of the day-to-day realities for parent caregivers. Thank you IpsenUS for elevating the dialogue on this important topic, helping to make the unseen seen.

#rarediseaseday2024

Check out this excellent issue. Thank you NHPCO News for highlighting neurojourney.org as a resource for families caring for a child with severe neurological impairment.

#pedpc
#RareDiseaseDay
#RareDiseaseDay 2024

Happy #RareDisease Day ! Everyday, we honor and support the families caring for children with a rare disease. But today especially.
#RareDisease #CareAboutRare #ShowYourStripes #CourageousStories

Join CPN and a panel of parent experts to talk all things WORK.
Register: bit.ly/3wngzyN
#Caregiver #Work #RareDisease #RareDisease

Parents and caregivers we hope you join us TONIGHT at 8 pm ET to learn about NeuroJourney and how you might find the guidance you are looking for in this new tool.
Register: bit.ly/3I9GHzY
#SNI #NeuroJourney #neurology #complexcare #CPN #Pedpc #hapc