@Salemoaks @savvycoop #pinksocks #advocate #friend #hcldr #htreads Sed omnia praeclara tam difficilia quam rara sunt.
Connecticut, USA
Joined February 2018
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#hcldr #patientchat #caregiver #patient #RareDisease #apparel #etsystore #etsysale #zebras #promocode @H_SalemOaks @K_SalemOaks @SalemOaks @Raising_Rare #dazzle4rare
We are launching our Etsy store, Apparel for Zebras, in collaboration with @raising_rare to provide high quality merch.
use code SAVE10 for $10 off a $100 purchase, and code SAVE30 for $30 off a $250 purchase.
etsy.com/shop/Apparel4Zebras
#RareDisease #apparel #etsystore #patient
We are launching our Etsy store, Apparel for Zebras, in collaboration with @raising_rare to provide high quality merch.
use code SAVE10 for $10 off a $100 purchase, and code SAVE30 for $30 off a $250 purchase.
etsy.com/shop/Apparel4Zebras
#RareDisease #apparel #etsystore #patient
Such a wonderful conversation with Dillon.
#mentalhealth @SalemOaks @Raising_Rare m.facebook.com/story.php?sto…
Mental Health Awareness month has come to a close but that doesn't mean we stop thinking about it. @Raising_Rare 's last episode with Dillon Loomis-Head touched upon so much of the #mentalhealth journey and struggles of being a #patient #clinicaltrials
raisingrare.fm
Jamie Roger retweeted
Wonderful chat, all! A heartfelt thanks to each of you. It's been an awesome #RareDiseaseDay2023 & a full #RareDisease month. Turning the calendar is equal parts sad because this is over, exciting because the #RareRevolution will continue, & a relief because I'm exhausted! #hcldr
ALT Selfie of me in my gray beanie with my MitoAction sweatshirt on. It says Hope, Fight, Cure. Paintings my children did in the background, Mito focused images of a park with the green Mito ribbon on a kite
#zebra #rarediseaseday2023 sometimes you just have to admit when you are on the safari and find something #rare #hcldr
Good discussion. As docs, they tell us "don't look for zebras if you hear hoofbeats." But if you don't look for zebras, you don't find them. I've diagnosed my share of zebras. Its all about a balance. #hcldr
Thank you #hcldr and @Colin_Hung @hcldr so glad we could spend the end of #rarediseaseday2023 with all of you... and now time for bed! but tomorrow is a new day and a new opportunity to continue @SalemOaks passion for helping #patients
Jamie Roger retweeted
Special shout-out to our amazing guests hosts tonight on #hcldr @EMoriartyWade @JamieRoger8 @K_SalemOaks @H_SalemOaks
Thank you so much for your time & for helping us honor #RareDiseaseDay2023
#rarediseaseday2023 #hcldr similarities between zebras.
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A4: What gets forgotten? The 364 days that aren’t #RareDiseaseDay. Don’t let up when the calendar turns to March. We don’t. We can’t. It gets lonely, isolating, & siloed.
Amplify our voices. Partner with us. Bring us into the healthcare conversations from the start. #hcldr
so glad we could guest host #hcldr tonight to bring #awareness to a #community that we love and care about. don't forget to give @Raising_Rare a listen. @SalemOaks is here to help and would love to hear from you.
Jamie Roger retweeted
Actually, I love the Montreal Model of patient partnership: the patient isn’t at the center, but an equal part of the team! For more info researchgate.net/publication… #hcldr #PatientPartnership
Jamie Roger retweeted
We spent today sharing our favorite episodes. #hcldr #RareDiseaseDay2023
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#hcldr #rarediseaseday2023 #livedexperience can never be underestimated or discredited. Patients should always on their own #medicalteam
Q4 The most important thing to do is remember zebras exist! And rarely fit the mould.
Second is to respect the patient's experiential knowledge. When patients are partners in their care, they have a much better experience, even with a rare disease. #hcldr #RareDiseaseDay
Jamie Roger retweeted
Completely agree @bonniesheeren. Finding a specialist who has an interest in your rare disease is honestly a goldmine. #hcldr
Jamie Roger retweeted
First Medication to Treat Friedreich’s Ataxia Approved on Rare Disease Day!
@ReataPharma
curefa.org/news-press-releas…
Jamie Roger retweeted
A3. I saw a model I really loved in New Jersey. A children’s hospital had special pediatricians who ONLY saw kids with complex medical conditions. The appts were 1 hour and they were amazingly thorough and kind. I wish other places would offer this — and for adults, too! #hcldr
Q3 How might medical professionals balance accurately diagnosing and treating people with rare diseases with the rest of their caseload? #hcldr #RareDisease
