Improving overall health outcomes by engaging #patients, #caregivers & #families at both individual & system level. #PxEngagement #Relationships #Representation
United States
Joined March 2015
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Navigations SOC retweeted
A reminder of what we’re witnessing:
• Measles is surging
• Cyclospora has reached record levels
• New World screwworm has returned after nearly 60 years
Investing in science, surveillance, and public health is far less costly than responding to a crisis.
Navigations SOC retweeted
I can summarize my inbox daily: hundreds of messages from desperate patients or family members at the end of their rope, and advertisements for webinars about low barrier Suboxone for OUD.
Navigations SOC retweeted
Breakout session and poster submissions for ELEVATE PX are open through August 14. Share your ideas with a global community committed to advancing the human experience in healthcare.
Learn more here: cvent.me/xD50mr
#ElevatePX #PatientExperience #HumanExperience
Navigations SOC retweeted
🚨Pancreatic cancer rarely announces itself. When it is caught at the earliest stage, 5-year survival tops 80 percent. Once it spreads distantly, that drops to 3 percent.
Three specialists walk through the 7 signs that most often get dismissed as something else.
Navigations SOC retweeted
In this broad lens look at the global rare skin disease landscape, GlobalSkin, board president and mucous membrane pemphigoid patient advocate, Marc Yale, unpacks “cosmetic” labels, diagnostic blind spots and psycho‑social and financial burdens. From the WHO’s forthcoming Global Action Plan on Skin Diseases to grassroots lobbying with local legislators, Marc advocates for a future where rare skin disorders are considered a “solvable” global health priority. Read here: bit.ly/RARESkin-UCB-GlobalSk…
#RARESkin #RAREDermatology #GlobalSkin #GlobalActionPlanOnSkinDiseases
@ucb_news
@IADPO
Navigations SOC retweeted
Mighties, we know all too well what it’s like to spend time waiting—whether that’s in a physical waiting room, on hold over the phone, or virtually through telehealth. Depending on the type of appointment, where we go and how we communicate with a medical professional can look very different.
What’s the longest amount of time you’ve spent waiting to see or speak with your doctor or another medical professional for an appointment?
Navigations SOC retweeted
Iran’s hardliners think time is on their side: renewed military action spikes oil prices, hammers Gulf economies, and forces Trump to blink over domestic politics & 2026 midterms.
The Islamic Republic has run some variation of this playbook against the last 6 presidents—and won.
Trump 2.0 is different.
Iran may be underestimating how much the landscape has shifted—and how costly that misread could be, possibly a fatal miscalculation.
I think the hardliners are misreading the moment and their assumed leverage
Navigations SOC retweeted
Thank you to the Women in Government Leadership & Innovation Summit for a co-sponsored discussion by Neurocrine Biosciences and @ultragenyx on the challenges and opportunities across the rare disease journey, from diagnosis to transitions of care.
The conversation was moderated by California State Assemblymember Diane Dixon with panelists and experts in the rare disease community – Kimberly Haugstad from @RareRising_Org and Jamie Sullivan from @EveryLifeOrg for Rare Disease. The conversation explored how state leaders can create meaningful impact by elevating the voices of rare disease patients and families in policymaking. Thank you to all involved who helped make this discussion possible. #LIS2025
Navigations SOC retweeted
Jimmy Kimmel tears up while talking about Donald Trump’s victory:
“It was a terrible night for women, for children, for the hundreds of thousands of hard working immigrants who make this country great, for health care, for our climate, for science, for journalism, for justice, for free speech”
Great research on #medicaltrauma #EhlersDanlosSyndrome
Excellent article. Worthwhile read on #ClinicianAssociatedTrauma
sciencedirect.com/science/ar…
This is unfortunately very common for those w #raredisease
My daughter is coming home tonight for the #holidays. I should be ecstatic, but I am terrified. I moved her out of state to get #appropriate care for her #illnesses. For 4 years her life was placed in jeopardy in #NorthDakota at @SanfordHealth. I understand #miscommunication 1
Long Thread: #TakingCareofMaya & #DoNoHarm
I’ve worked in #HumanServices field for over, well a very long time. I have believed since day ☝🏼 that while working in these fields are difficult & have come exceedingly more difficult we have a #responsibility to continue to assess 1
Navigations SOC retweeted
stay. No, it’s not fair bc we deserve supports and healthy cultures and our boundaries to be acknowledged.
In #TakingCareofMaya I can recognize there were concerns that did not to be addressed YET I believe that it could have been addressed far better, that many needed to tap 9
Navigations SOC retweeted
excellent #professionals work in this system forging ahead providing #care, safety, #compassion, #education while at same time rising #voice & pushing for change.
Once we are unable to do that. Once we see we are apathetic, that we do not speak out we do need to assess why we 8
$373 #million dollars 💵
That’s how much #BigPharma spent in 2022 lobbying efforts.
In 2023 according to #Statista #pharmaceutical & #healthcare products industry spent approximately 373.74 #million dollars on #lobbying.
During that same time period #insurance companies spent approximately 158.54 #million.
#HealthcareInAmerica
#Americans pay 4x the amount for #medications compared to other countries.
Agreed #MakeItMakeSense!!!!!
Did you know that #Americans pay almost 4x as much for #pharmaceutical #drugs as other developed countries? (Investopedia 9/23) #HealthCareInAmerica #MakeItMakeSense
No one should be forced to move from one #state to another #state in order to get #compassionate, #appropriate, #patientcentered care. #NorthDakota #Healthcare
My baby girl is finally heading back to her ‘home’ in the Cities. She was only supposed to be here for a little over 24 hours but the weather in #NorthDakota held it up for a few days. Due to the continued severe fluctuations with T3 we have made 2 decisions. One, she cannot 1
#Medicalbiases
Have you experienced medical bias during your care?
#MedTwitter
Numerous studies have examined the #impact of #bias on #healthcare; how often it occurs as well as the consequences. A few areas where bias can impact healthcare
1. #Gender
2. #Socioeconomic
3. #Confirmation bias
4. #Obesity
5. #MentalHealth
These are just a few areas 1
Thread 🪡 #PainAwareness
For several years my daughter struggled to get access to #adequate, #appropriate & #compassionate care. Why?
My belief ➡️ #LTOT + #ComplexHealth + #Biases + + #Assumptions
Prior #healthcare prof chose to focus on the #opioids my daughter was on 1