I’ve asked Oracle which one of the speakers identifies as a patient since it’s not listed. Will report back. As we know, you can’t talk about “with patients at the center” without a patient ✅ CC: Matthew Zachary ✡️ 🇮🇱🟦 Christine Von Raesfeld Grace Vinton

Please vote for my little dude!! Help us raise awareness for genetic testing for those with cerebral palsy!
You don't have to input any info - just click on the heart and vote - PLZ share!
#CTNNB1 Global Genes CTNNB1 Connect & Cure
JOY-riding cprn.org/contestants/jo… cprn.org

I hope you will join us for this amazing panel with real patients and caregivers talking about their experience with virtual care. To register, click on the tweet below.

Here's to us getting the care we deserve.

I wish there were more patient/caregiver/consumer/advocate voices at events like #HIMSS24 … sigh 😔 One day we will get there. I hope one day soon!

From symptom onset to the diagnostic odyssey to grieving life that was/is/could have been to fighting like hell for solutions to hope for drug trials to them failing & everything else not seen. 💔

Thinking of & standing with Sandra, Brian, & the ALS community today & everyday.❤️

Don't miss the chance to bid on an exciting Atlanta Hawks vs. Charlotte Hornets game package! givebutter.com/c/2024VCPTopGo…

Game is on Saturday, March 23, and also includes some cool #Hawks swag. Act fast - the bidding ends on Sunday, March 10 at 3:00 PM ET! Proceeds benefit Cure VCP Disease

This piece is raw and real. Thank you Adam Johnson - DadVocate for sharing your journey with such authenticity and honesty. I see you and I stand with you always 💚

I’m in the midst of planning so many virtual sibling support groups, and conference activities for sibs! It’s exciting to see organizations thinking about ways to incorporate sibs! Is your group wanting to do more for the sibs? Let’s talk! #raredisease #genechat #sibling

#RareDisease Day2024 : a time of hope, progress, & joy. Yet I’m not joyful & I have some choice words for my #RareDisease .

To those advocating & spreading awareness on #RareDisease Day, thank you.

To those hurting/struggling, I see you.💚
#RareDisease Truth

rarediseasedad.com/owning-my-stor…

.Neena Nizar was traveling home from #ASBMR2023 after speaking as a #PatientAdvocate for #RareBoneDisease .

@United Eppley Airfield this is unacceptable. ASBMR stands with Neena Nizar. Everyone deserves the right to travel with dignity. #WheelchairRights

Neena Nizar I'm sorry this happened to you and sorry doesn't fix the situation. Tagging Paul Melmeyer as I know he has been advocating hard on this for MDA Advocacy and the mobility challenged community.

This is inexcusable United Airlines 🦼 are not just luggage. They are essential for the user. Rendering a wheelchair unusable is analogous to crushing a walking person’s legs!

A personalized mobility device cannot be replaced/substituted. My friend & the entire #disability community deserves better. Apologies don’t cut it. We need policies followed, adequate/continued training, & tools for staff to handle chairs correctly. Ugh. United Airlines #RightsOnFlights

Grief changes you, and it changes your friendships. Many people withdraw from friends after life-changing loss. If you find yourself longing to reconnect with friends, but aren't sure how to do that as the person you are now, you're not alone. youtu.be/-xev54_FYRY

This picture is drawn by Spencer Johnson, 7 to support his father Adam Johnson - DadVocate

#leighsyndrome #mito #mito chondrialdisease #colorformito

My new blog post fits w/ #WorldMentalHealthDay , discussing two important supports for my #mentalhealth : #community & stepping back.

It’s hard for me, for a variety of reasons, but I’m taking a reprieve. And that’s ok.

Maybe others relate. I see you. 💚

rarediseasedad.com/owning-my-stor…

Living with #raredisease is lonely. #PeerHealthAdvice is key to survival, both physically and mentally. There is power in numbers.

Powerful Global Genes panel: youtu.be/pJrDW6M7a6g?si…

Grace Vinton Project Sebastian HLTH Foundation HLTH Nick Adkins Dana Trampas (she/her) HIT Like a Girl Pod Tjasa Zajc Kathryn Ayers Wickenhauser Shereese Maynard, MS; MBA 😷 She/Her Enlightening Results 💡 Effie Parks Savvy Cooperative | #AskPatients THIS. The patient voice is integrated into the programming at HLTH so that stakeholders solving for this population can hear directly from them.

It's nothing like any other program we've seen at healthcare conferences before. And it's about time!

#HLTH2023 #patientvoice

We hear talk all day “patient-centered” care, innovation, research, design, but is it?

HLTH Foundation is bringing real patients & caregivers into town to shake up #HLTH2023 & make a lasting impact🌪️

Sign up to share your story!

calendly.com/hlth-2023/hlth…

I never knew how much love my heart could feel. It is the kind of love that you can’t explain.

We are still asking for continued prayers.

Due to current circumstances I have had to take unpaid FMLA. Our family would greatly appreciate any assistance🤍

gofund.me/c303f019