Top Tweets for #RarePatient
We welcomed Phil Gattone, President of @nbd_foundation to Sacramento!
We’re ready for a great day of advocacy at our Health Care Access Forum & California Rare Disease Access Coalition.
Together we amplify the #bleedingdisorders & #rarepatient voice.
#advocacy #accesstocare
@drkeithsiau @LuannTam That's a good reason to:
- do an exclusion diet
- go see your doctor
- cut down late meals, alcohol, stress
..actively seek resolution of gastric acid reflux #heartburn
Seeing a 2yr survivor at weekend, stomach reduced to size of walnut by cancer surgery, but alive.. #rarepatient
The @ORCGlasgow has created a downloadable resource, Know Your 'Ologists'.
As a #RarePatient, seeing many #Specialists at one time can be common practice, and this resource could be useful to those finding their feet.
Download the PDF: https://t.co/zUUhhbHhOw
#Rarediseaseday as a #raremom, #raredaughter, #rarepatient & #rareleader. I'm blessed with a multidisciplinary team. Not everyone does. #Equity is key for 300M people worldwide affected by #rarediseases. Social opportunity, healthcare & access to diagnosis & therapies is needed.
Check out my recent post on IG 🤍 https://t.co/qocMFEUghP #TravelEssentials #RarePatient #RareDisease #LivingWithFCS
#RareDisease @SoniyaFit: '🧬 2 weeks to go 🧬 - Are you a #RarePatient or a #caregiver wanting to learn more about storytelling through Instagram? If so, this one’s for you 🤍 Join me at the #RarePatientAdvocacySummit i…, see more https://t.co/8JJSArsmJa
🧬 2 weeks to go 🧬 - Are you a #RarePatient or a #caregiver wanting to learn more about storytelling through Instagram? If so, this one’s for you 🤍 Join me at the #RarePatientAdvocacySummit in San Diego or attend virtually! #GGSummit22 #GlobalGenes #RareDisease
Starting this weekend I'll be posting her experience of living with #alagillesyndrome, in her own words. A remarkable wordsmith, a dedicated lawyer, & a fierce yet gentle woman, she's lit the path for many to follow through her #rarepatient advocacy work in #India and abroad.
Another lovely photo of the Nazca Booby now in care at our #SoCal center from Oregon. #RarePatient
📷 by Katrina Plummer
To celebrate the launch of Rare Central™, we are committed to the support of patient groups through our Pioneer Program. Successful applicants get their first year entirely free, providing a valuable opportunity to smaller patient groups.
https://t.co/iPJyPuzhRa
#RarePatient
If you haven't given either of @salemoaks #podcasts a listen, check out @imdevpodcast and @raising_rare
Both are hosted by @k_salemoaks a truly deserving #finalist of a #wegohealthaward
#hcldr #patientchat #patients #healthcare #pharmaceutical #rare #raredisease #rarepatient
PHA Out and About: Our Michael Knaapen is at this week's annual #RarePatient Advocacy Summit spreading the word about PHA and connecting with colleagues. He is pictured here (far right) with the Global Genes’ RARE Global Advocacy Council. https://t.co/WBbRXG01lF #2019GGSUMMIT
We are very excited to attend the @GlobalGenes #RarePatient Advocacy Summit in San Diego, CA in September! How many wonderful friends will be there to join us?
I absolutely love attending events for #raredisease both as an #advocate and #rarepatient! The natural high of being surrounded by others that really "get you" without having to pretend to be healthy. It's always exhausting to come home but so worth overspending my spoons!
To end my #RareDiseaseDay2019 I love that my quote about being a #rarepatient was included in an article by @TheMightySite and @GlobalGenes. Check it out and RT.
We partnered with @TheMightySite to ask about small but significant things people do as patients or caregivers that help make life with #raredisease easier. Thank you to everyone who shared their insights! Check them out at https://t.co/06BbdNyC6d #CareAboutRare #WRDD2019
@RarePOV @RareAdvocacy Mean it! You do so much amazing work for the #rarepatient and the family units. You deserve to be recognized for that!
On Giving Tuesday, @GlobalGenes Seeks Support for Its #RarePatient Impact Grant Program https://t.co/n3vVd6fgEh #RareDisease #hcsm
Close to meeting the match! Still time to have your gift doubled to launch 10 new communities in 2017!! https://t.co/eiaI37QC03 #RarePatient
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