Sabitlenmiş Tweet
Patient Stories will finally be back with a third season in 2023! We are looking for an intern who would like to help with podcast planning and light editing. Interested? Email podcast@greygenetics.com #GeneChat (1/2)
English
Patient Stories
368 posts
Patient Stories
@GreyGeneticsPod
Sharing the stories of people with genetic conditions. Have a story you'd like to share? Email [email protected] No longer active on social media!
Brooklyn, NY Katılım Ekim 2018
73 Takip Edilen391 Takipçiler
"For diseases like EDS, those illnesses so ignored or misunderstood that patients can barely find a knowledgeable doctor, much less the genetic source of their condition, it may require those with intimate, untapped knowledge — patients themselves — to shepherd science forward."
Isa Cueto@isabellacueto
Ehlers-Danlos Syndromes are connective tissue disorders — previously considered rare, now increasingly seen as neglected — w/ a fraught history. This is about #EDS patient-researchers using their expertise and ire to fight back, to forge ahead. NEW: statnews.com/2022/12/12/ehl…
English
No, this is not paid! The podcast makes $0. Ideally, this opportunity is for a prospective genetic counselor. Time spent on podcast is flexible and intern will be supported in their learning and toward their GC-related goals.
English
Patient Stories will finally be back with a third season in 2023! We are looking for an intern who would like to help with podcast planning and light editing. Interested? Email podcast@greygenetics.com #GeneChat (1/2)
English
Patient Stories retweetledi
My mom’s story has long made me feel weird about my place in the abortion conversation. But, my disability is actually not a weapon against abortion access, like I have been made to believe. It’s an argument for it.
My latest for @nytopinion: nytimes.com/2022/07/31/opi…
English
Patient Stories retweetledi
If anyone wants a quick link to a petition for a call to NSGC to start taking Requests for Proposals from new firms to lobby the US Government for CMS recognition so that we might be able to turn our attention to lobbying for our patients, it's right here: chng.it/rPSbkmc2WD
English
Patient Stories retweetledi
Just finished @ticktickboom on Netflix. I loved the movie so much and related on such a personal level as I also have Marfan Syndrome, the same condition that caused Jon Larson’s aortic aneurism. @Lin_Manuel I’m sad Marfans wasn’t mentioned but I loved the movie even so💖
English
Patient Stories retweetledi
"There are many incredible medical professionals out there. But the ones I saw failed me when I needed them most," writes Mia Clarke.
washingtonpost.com/lifestyle/2022…
English
Patient Stories retweetledi
There are still a few spots left in the Patient Stories Club! The first meeting is Monday. You can sign up here: greygenetics.as.me/patient-storie… #GCchat #genechat #genetalk #genetics #geneticcounseling
Patient Stories@GreyGeneticsPod
THE PATIENT STORIES CLUB IS BACK! This club will allow those interested in #geneticcounseling to engage in conversations between peers, facilitated by a certified #genetic counselor! You can sign up here: linktr.ee/greygenetics #GCchat #genetalk #genechat #pregc
English
THE PATIENT STORIES CLUB IS BACK! This club will allow those interested in #geneticcounseling to engage in conversations between peers, facilitated by a certified #genetic counselor! You can sign up here: linktr.ee/greygenetics
#GCchat #genetalk #genechat #pregc
English
Patient Stories retweetledi
You can listen to the new episode of Genotypecast discussing the recent @nytimes article here: anchor.fm/genotypecast/e…
@katie_stoll @sarahkliff @aatishb #GCchat #NIPT #geneticcounseling #genetalk #medtwitter #genetictesting
Grey Genetics@GreyGenetics
NYT published an article focused on false positive rates in NIPS/NIPT. The reaction on Twitter from genetic counselors was mostly critical. Listen to the new episode of Genotypecast to hear GCs Eleanor Griffith and @katie_stoll discuss the implications of this article. #GCchat
English
Patient Stories retweetledi
NYT published an article focused on false positive rates in NIPS/NIPT. The reaction on Twitter from genetic counselors was mostly critical.
Listen to the new episode of Genotypecast to hear GCs Eleanor Griffith and @katie_stoll discuss the implications of this article. #GCchat
English
@marleahdeank related episode! greygenetics.com/men-get-breast…
English
Patient Stories retweetledi
Can’t get my recommended high-risk colonoscopy screening right now because I don’t have $800 toward a deductible lying around. My grandfather was dx at 29 with colon cancer and both my parents have had pre-cancer polyps in their 40s. Yay, American healthcare. 😑
English
Do you have a personal story related to NIPS / NIPT or other related genetic testing you’d like to share? Send an e-mail to podcast@greygenetics.com
Grey Genetics@GreyGenetics
If you can get past the use of the word “wrong” in the context of a screening test… (try subbing “false positive)- this is good article on some of the problems with NIPS tests and their misleading marketing in our profit-driven healthcare system. nytimes.com/2022/01/01/ups…
English
Patient Stories retweetledi
If you want to learn more about #EpidermolysisBullosa, check out our @GreyGeneticsPod episode with Silvia, who discusses her son's experience living with the condition: greygenetics.com/epidermolysis-… #GCchat #ebawareness #cureEB
Grey Genetics@GreyGenetics
A patient with #EpidermolysisBullosa who was treated with his own genetically modified skin cells is thriving 5 years after the initial treatment. @MeganMolteni #cureEB #EBawareness statnews.com/2021/12/08/las…
English
Patient Stories retweetledi
We were saddened to hear about Nicky's recent passing, and our thoughts are with him and his family. If you are interested in supporting Nicky's family during this difficult time, you can donate for funeral expenses here: gofundme.com/f/nickyfuneral. #GCchat #cureEB #EBawareness
Grey Genetics@GreyGenetics
If you want to learn more about #EpidermolysisBullosa, check out our @GreyGeneticsPod episode with Silvia, who discusses her son's experience living with the condition: greygenetics.com/epidermolysis-… #GCchat #ebawareness #cureEB
English
We would also Love to share more #abortionstories related to genetics. Prenatal GCs - you have a window on this issue that most people just don’t have. #ReproductiveJustice #AbortionRights @NSGCPrenatalSIG #GCchat
English
Thanks to @StoryCorps for the inspiration and many wonderful stories they have shared. Interested in sharing your story in this new format? DM us or better yet e-mail podcast@greygenetics.com #PatientStories #StoryCorps @GreyGenetics #GCChat
English
😊🤗 ♥️🙏 There will be a new season before too long! Piloting a new format with interviews btw patients and a loved one (parent/child/SO/caregiver/close friend/GC/you tell us!). We’ll provide some tools to guide you and then put out your conversations!
Kelsey Fusco, MS, CGC@KFusco_GC
Spotify wrapped told me that #1 podcast of 2021 was @GreyGeneticsPod - thank you @elo81 🧬👏🏻 #SpotifyWrapped open.spotify.com/show/6rZols8K9…
English