Jamie Roger (@JamieRoger8) header
Jamie Roger (@JamieRoger8) profile picture

Jamie Roger

@JamieRoger8

@Salemoaks @savvycoop #pinksocks #advocate #friend #hcldr #htreads Sed omnia praeclara tam difficilia quam rara sunt.

 Connecticut, USA
salemoaks.com
Joined February 2018
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  • Following404
  • Followers465
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Photo by Jamie Roger (@JamieRoger8)Photo by Jamie Roger (@JamieRoger8)Photo by Jamie Roger (@JamieRoger8)Photo by Jamie Roger (@JamieRoger8)Photo by Jamie Roger (@JamieRoger8)Photo by Jamie Roger (@JamieRoger8)Photo by Jamie Roger (@JamieRoger8)Photo by Jamie Roger (@JamieRoger8)Photo by Jamie Roger (@JamieRoger8)Photo by Jamie Roger (@JamieRoger8)
Replying to @hcldr @EMoriartyWade @JamieRoger8 @H_SalemOaks
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
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

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

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Jamie Roger retweeted
HCLDR Moderator (@hcldr) profile picture
HCLDR Moderator@hcldr1 Mar 2023
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
Image from HCLDR Moderator (@hcldr)
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Jamie Roger retweeted
XRC20 (@XRC2O_Official) profile picture
XRC20@XRC2O_Official1 Mar 2023
Replying to @RareDiseaseDad
#hcldr
Image from XRC20 (@XRC2O_Official)
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Replying to @RareDiseaseDad @hcldr
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
Image from Ma vie de zèbre • A-Danielle G. 😷 (@ADanGrenier)
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We spent today sharing our favorite episodes. #hcldr #RareDiseaseDay2023
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Replying to @bonniesheeren
Completely agree @bonniesheeren. Finding a specialist who has an interest in your rare disease is honestly a goldmine. #hcldr
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First Medication to Treat Friedreich’s Ataxia Approved on Rare Disease Day! @ReataPharma curefa.org/news-press-releas…
Image from FA Research Alliance (@CureFA_org)
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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
HCLDR Moderator (@hcldr) profile pictureHCLDR Moderator@hcldr1 Mar 2023
Q3 How might medical professionals balance accurately diagnosing and treating people with rare diseases with the rest of their caseload? #hcldr #RareDisease
Image from HCLDR Moderator (@hcldr)
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Jamie Roger retweeted
Colin Hung (@Colin_Hung) profile picture
Colin Hung@Colin_Hung1 Mar 2023
A2 Technology has helped to better quantify the #RareDisease challenge. Before everyone suffered in isolation. Tech has allowed people to connect and thus raised their collective voices. We need more tech like that #hcldr
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A2. I love that @myTomorrows helps patients and physicians search for #clinical trials. Patients can search on their own search.mytomorrows.com/en or have a Patient Navigator do it for them (for free). #hcldr
HCLDR Moderator (@hcldr) profile pictureHCLDR Moderator@hcldr1 Mar 2023
Q2 How can advances in technology help to lessen the burden on rare disease patients and their caregivers? #hcldr #RareDisease
Image from HCLDR Moderator (@hcldr)
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Replying to @EMoriartyWade @Colin_Hung
Curcuma, kale and so many other fads… I’ll never forget the stranger in the grocery store arguing that I should just take curcuma and it would cure… my GENETIC disease. (she had asked about my brace and I’d taken the opportunity to raise awareness… ugh. #hcldr #RareDiseaseDay
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Replying to @RareDiseaseDad @hcldr
A2b: Those possible treatments/cures are another important way technology can help lessen the burden on patients & caregivers. That’s the end game goal. We need treatments & cures. Time is ticking, & some of us don’t have much of it left. Let's go!!! #hcldr #RareDiseaseDay
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A1. Don’t offer your non-medical advice about special diets, essential oils, homeopathic cures. Chances are we have heard it and/or tried it, and it’s exhausting and depressing to have to explain why it didn’t work. #hcldr
HCLDR Moderator (@hcldr) profile pictureHCLDR Moderator@hcldr1 Mar 2023
Q1 For those living with or caring for someone with a rare disease, what advice do you have for people who want to help? What should they say/not say, do/not do? #hcldr #RareDisease
Image from HCLDR Moderator (@hcldr)
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Replying to @RareDiseaseDad @hcldr
A1b: When in doubt, ask how you can help. The answer might be different depending on the person, time, place, situation, etc. Another idea...identify areas you are strong in & offer specific ways you might be able to contribute based on that. Worth a try! #hcldr #RareDiseaseDay
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Replying to @hcldr
A1a: Amplify our voices. In #RareDisease, we are constantly advocating, raising our voices, trying anything to gain support, funding, coverage, etc. (for crying out loud, I busted out the old wig from my elem school teaching days😂).#hcldr #RareDiseaseDay teapawt.net/RareDiseaseDad/status/…
Adam Johnson - DadVocate (@RareDiseaseDad) profile pictureAdam Johnson - DadVocate@RareDiseaseDad28 Feb 2023
The #RareDiseaseDay2023 Triple C episode is live! Enjoy an inside look at how Emma supports the #mito community. She found Another Helping (@Bake4Mito) at 11 years old & is still at it 2 years later. The best! #RareDiseaseDay #Bake4Mito #RareDisease ⬇️ instagram.com/reel/CpNq8ZjDh…
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Q1: both of my sons have epilepsy and I remember a “friend” saying she “understood” because her cat had a seizure once. Nope. #hcldr
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Jamie Roger retweeted
Nick Adkins (@nickisnpdx) profile picture
Nick Adkins@nickisnpdx1 Mar 2023
Replying to @hcldr @H_SalemOaks @JamieRoger8 @EMoriartyWade
sending love & hugs from the west. here to support and share space with the heartspeak of some of the bravest heroes i know. #hcldr 💖🦓✨
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Next up on our favorite episodes: Comparing Notes: Transitions Are A Constant in Rare Disease Who knew talking about G-tubes could be so fun? #RareDiseaseDay #RareDiseaseDay2023 raisingrare.fm/episodes/tran…

Comparing Notes: Transitions are a Constant in Rare Disease — Raising Rare

The day you hear that your child has a rare disease your life changes. And the changes just keep coming. From dietary changes, to feeding tubes, to school, and even additional diagnoses. These lead...

raisingrare.fm
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Oops, that’s actually a link to the original trailer! The full episode is here raisingrare.fm/episodes/01-c… #RareDeseaseDay #RareDiseaseDay2023
Raising Rare (@Raising_Rare) profile pictureRaising Rare@Raising_Rare28 Feb 2023
Let’s start at the beginning. Episode 1! #RareDiseaseDay #RareDiseaseDay2023 raisingrare.fm/episodes/intr…
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We spoke to Casey McPherson during the Global Genes Patient Advocacy Summit in San Diego last fall. Casey’s daughter Rose has HNRNPH2. He has made the extraordinary step of starting his own lab. @ToCureARose #RareDiseaseDay #RareDiseaseDay2023 raisingrare.fm/episodes/case…
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