There's huge overlap between the rare community and the #disability community. Our joint survey with RareDiseaseDiversityCoaltion shows the profound effects of life with a #RareDisease. As we mark the anniversary of the #AmericansWithDisabilitiesAct #ADA, we are thinking of our rare family!

Start your week off by reading the latest in Batten disease research! Our Head of Research & Medical Affairs Dr. Ineka Whiteman has you covered with a conference research summary, updates on clinical trials, a new research study opportunity, and more! 🔗 ow.ly/4WrZ50SNKCI

And trying to support you. Latest blow is the parking garage suddenly stopped accepting the parking vouchers our complex care clinic bought (with grant money) for our patients when they come see us in clinic. Will keep moving forward and advocating for things big and small.

Now is the time to prepare. North Carolina could see several days of rain. Get your emergency kit together. #BePreparedBeSafe

"Communication is about what is received, not what is intended. If there is a gap between what you are saying and what they are hearing, you have to find a new way to say it." -James Clear and VitalTalk will help teach you to build congruence

Prioritizing the wellbeing of doctors is the ethical thing to do. It also protects patient safety & accessibility to care. We now know it’s also the financially savvy thing to do. For every doctor who leaves due to burnout, the cost to an organization is $500,000 to $1 million.

A referral to #palliativecare does NOT mean "the team thinks my child is going to die soon." Palliative care is for all the life following diagnosis. #pedpc Courageous Parents Network

New data: Most doctors take less than 3 weeks of vacation a year, and 70% work while on vacation. Both factors were associated with higher rates of burnout. We have to stop the vacation shaming and find realistic strategies for coverage without burdening our colleagues.

🩵💜

Please help support the children with medical complexity impacted by #HurricaneHelene #complexcare #pedpc #hapc #pediatrics #medicallycomplex #medicallyfragile #NorthCarolina gofund.me/a52bfc97

So grateful for this opportunity!!!

Family, friends and extended community are all sources of comfort and assistance. In the hospital setting however, demand is increasing for an additional layer of support. This is called #PalliativeCare. Here Courageous Parents Network break down the steps: rarerevolutionmagazine.com/understanding-…

Thank you Bionews for spotlighting NORD's financial support programs for people affected by #BattenDisease. Our RareCare Patient Assistance Programs help cover healthcare costs not covered by insurance, and our Emergency Relief Program assists with unexpected non-medical

New #TPPCR citation list and commentary from our Special Edition Parent Perspectives on trauma-informed practice for parents of children with medical complexity - mailchi.mp/716925861283/t…

Today is World Hospice and Palliative Care Day, but at CPN, we wish #PalliativeCare and #Hospice would be de-coupled from each other. Hospice is for END OF LIFE, whereas Palliative Care is for ALL OF THE LIFE following diagnosis of a serious illness. WHPCA #pedpc #hapc #WHPCD

I’m thrilled to announce that I’ll be joining the pediatric palliative care team at CHOC Children's this summer! I’m so grateful to be joining such an incredible team and to have the chance to serve the children and families of Southern California. #pedpc #hapc #complexcare