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Tweets177
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Likes520
Your loved one can leave a lasting legacy behind for their rare disease community.
Great talk from Taylor Kane @rarelikeher founder of @remember_girls talking about the challenges on awareness & diagnosis of female "carriers" of X-linked conditions, many (most?) of which can present physical manifestations of XL disorders. #RareDiseaseMonth #RareDiseaseDay
Join @Hemophiliafed, @RareDiseases, and @Remember_girls for the Barriers to Diagnosis: Women & X-Linked Diseases webinar on 2/8! The discussion will include similar challenges faced by women with bleeding disorders and other x-linked diseases. More: bit.ly/3nT3eav
Adrenoleukodystrophy (ALD), like most rare diseases, can impact people and families in many different ways. Olivia, Jon and Ken came together to talk about their experiences with this rare disease. allstripes.com/blog/3-differe…
NJ's economy grew 3.7% this summer, ranking fourth nationwide. Professional, science and technical services and finance led the way.
See how your state economy fared in the third quarter of 2021; read our latest GDP by state blog: go.usa.gov/xeJnM.
Remember The Girls is participating in #GivingTuesday! Please if you are able support our mission to advance access and care for X-linked carriers. Our fundraising goal is $1,000! #Gchat facebook.com/donate/5065174…
#RecodeWhatsNext — How can we recode misconceptions about adrenoleukodystrophy (ALD)? Rare disease advocate + founder of @remember_girls Taylor Kane (@rarelikeher) encourages those living with ALD to share your personal experiences so you can empower others on their journey.
Interested in signing up for the AllStripes ALD research program as a woman with ALD? Here’s how! Please direct any additional questions to [email protected]. youtube.com/watch?v=F8cD8s…
What does it mean to be a carrier of an X-linked disease? Women with X-linked diseases are often considered “carriers” since they have a 50% chance of passing on their genetic variant to their children. In X-linked diseases like #ALD, carriers can also experience symptoms.
Israel - updated status: 💉 (graph) 🤧 * ZERO! (0) Covid deaths yesterday First such day in >1yr! * ~10 infections /M/d (100-fold drop) * Hospital Covid wards closing 😷 Masks off in open areas Schools fully open Green passes (in high-risk indoor setting) Vaccines work! 1/2
What does it mean to #FightLikeAMother? Kim is taking action to make the future brighter for her son and all other children impacted by SLC6A1.
You may have heard of newborn screening, but do you know why it’s so beneficial for the rare disease community? Watch our latest explainer video created by our Project Manager, Angela, to find out! #NewbornScreening #RareDisease #RareDiseaseAwareness
Have you heard about the Speeding Therapy Access Today (STAT) Act? At AllStripes, we want to see better, faster treatments for rare conditions and this legislation could make a big difference! Ask your Congressperson to support by heading to StatAct.org! #STATAct
delete ur account
New Jersey and Delaware will be merging to become one state, named “New Delaware”. We’re offering @NJGov a fresh start. We’ll forget about all that stuff in the past. The capital will be the @demembridge, jughandles will be banned, and the full coastline will be “the beach.”
This Monday we needed some motivation! What are you looking forward to this week? We are looking forward to sharing some exciting new events with the RTG community!😉 #Rememberthegirls
We are proud to be a supporter of @Firefly_Fund! Firefly Fund is a non-profit organization dedicated to finding treatments for rare, neurodegenerative diseases, starting with Niemann-Pick disease type C. #NPC fireflyfund.org/meet-our-donor…
In honor of #WomensHistoryMonth, @remember_girls executive director and founder, Taylor Kane, explores the link between her own family history with #raredisease and the stigma that women who are carriers may face in the latest #RAREis post: bit.ly/3f091rc.
We are continuing our International Women’s Day spotlight series by featuring Charlene, our Director of Patient Operations!
So excited and proud of Jennifer Choi for successfully defending her thesis this afternoon! I've had the pleasure of knowing Jenn before she even applied to grad school & it's been amazing to be a part of her journey to GC! #GCChat @NUGCprogram
In advance of Rare Disease Day, MWH spoke with Taylor Kane, a carrier for x-linked adrenoleukodystrophy, on her thoughts on how carrier screening is a critical tool in guiding care plans. Read the blog here: bddy.me/3rauFMg #rarediseaseday #careaboutrare #rarediseases
Roseteau @roseteau27820
59 Followers 5K Following
Sylvia Rupani-Smith @srupanismith
2K Followers 2K Following Zuck wins. Sorry Elon. Follow me on Threads!
Guillermo Rodriguez B... @BeyGuillermo
64 Followers 117 Following Assistant Professor @ University of Pittsburgh #Neuroscience #Oligodendrocyte #Leukodystrophy #Neuroglia #Demyelination #NuclearLamina #laminb #Als #Motorneuron
Caitlin Nichols, PhD @caitlinanichols
791 Followers 1K Following Science Program Manager @ 23andMe Lung Cancer Genetics Study | @Harvard Biomedical Sciences PhD | #lungcancer #scicomm #raredisease | Views my own
LDNBSActionNetwork @LDNBSAction
71 Followers 118 Following The Leukodystrophy Newborn Screening Action Network is a coalition of leukodystrophy patient advocates dedicated to championing the cause of newborn screening.
We Carry Kevan @WeCarryKevan
417 Followers 29 Following Believing in the inherent value of all people, we are redefining accessibility as a cooperative effort.
Brians Hope CT @BriansHopeCT
301 Followers 428 Following Through Brian’s Hope, a 501(c)(3) charitable foundation, we look forward to when no child experiences the devastation of adrenoleukodystrophy (ALD)
Paul Orchard @paulmdmn
70 Followers 650 Following
PHUA Wee Seng @phuaweeseng
11 Followers 291 Following
Yoav Gazelle @yoav_gazelle
26 Followers 19 Following
Breaking Down Barrier... @BarriersDown
1K Followers 3K Following BDB is a network of organisations working together to improve the lives of people from marginalised communities and addressing health inequalities.
Cure MLD @cure_mld
109 Followers 163 Following We are on a mission to #cureMLD, a #lysosomalstoragedisorder (LSD) & #leukodystrophy impacting kids & adults. #genetherapy #advocacy https://t.co/AlcnvCedda
Bala Murugan @BalaMur11219560
15 Followers 486 Following Tata Motors Kaveri - For more details ,calll/Whatsapp9150011631
Toni94 @Toni9411542813
3 Followers 540 Following
Living in the Light @stayhomeforrare
126 Followers 253 Following #IStayHomeForRare join us in solidarity with those staying home protecting the lives of children, family members, and friends living with rare diseases.
Arndt Rolfs @ArndtRolfs
518 Followers 1K Following CEO CENTOGENE AG - we have a lifetime commitment to our patients
Kayla J. Muirhead, Ge... @KaylaJordan_GC
35 Followers 16 Following Hi! I am a genetic counseling student at Stanford pursuing my thesis on ALD caregiver quality of life for families whose children screen positive on NBS.
Ellen Elsinghorst @Ellenelsi
181 Followers 579 Following RIVM, communicatie hielprikscreening, twittert op persoonlijke titel
CoFund Health @CoFundHealth
136 Followers 182 Following The only personal crowdfunding site assuring donors their money is being used only as intended for medical expenses 💚
WeTackleRare @wetacklerare
212 Followers 135 Following Do you dream of a world where scientists and doctors are elevated to the same level as professional athletes? So do we...
AllStripes @_allstripes
3K Followers 1K Following Our mission is to unlock new treatments for people affected by rare disease.🚀
Probably Genetic @ProbGenetic
596 Followers 751 Following Rare genetic conditions can take years for doctors to diagnose. #ProbablyGenetic is a personalized healthcare company working to help you find answers.
Carol J. Dickerson, P... @RCSFounder
587 Followers 3K Following Founder & CEO @RareChannels / Visionary / Thought Leader #RareIsDifferent #SpectrumOfConnections #ConceptToCure #BeFound
Jude Acosta @jude_acosta
19 Followers 193 Following
RareChannels @RareChannels
472 Followers 3K Following #DisruptionIsHere #TheSpectrumOfConnections #ConceptToCure #FindAndBeFound #B2B https://t.co/4UEi1CS6ez
reenrunandride @reenrunandride
80 Followers 1K Following
Leukodystrophy Austr @leukoaust
177 Followers 151 Following Leukodystrophy Australia - supporting the Long Walk across Australia for Leukodystrophy
The Calliope Joy Foun... @caljoyfndtion
418 Followers 143 Following Cures, community & cupcakes for kids with leukodystrophy. 🧁 Venmo: CalliopeJoy
Shannon Burkoth @shannonburkoth
1K Followers 3K Following Narcolepsy & Rare Disease Advocate, Consultant & Public Speaker. Rising Voices of Narcolepsy. Views are my own. #REALnarcolepsy #MoreThanSleepy
Rare Diseases & Disab... @raddafoundation
1K Followers 3K Following Advocate and activist for Rare Diseases and Disabilities in Zimbabwe and Africa as a whole.
Neena Nizar @NeenaNizar
2K Followers 2K Following Founder & Executive Director of The Jansen's Foundation. KOL,TEDx Speaker, Educator, Change Leader, https://t.co/Ty1g3WHftT Opinions are my own
CdnAssocOfPompe @pompecanada
789 Followers 1K Following A Canadian patient group for families affected by #Pompe Disease. Occurring in 1/40k births, it's very rare. Comments by @bcrittenden
Brad Crittenden @bcrittenden
633 Followers 915 Following Web-designer, patient advocate, #DragonBoat coach, proponent of #NewbornScreening, Executive Director of @pompecanada #CareAboutRare
Mary McDirmid @marymcdirmid
799 Followers 4K Following Be the Change. Use your powers for good. #pinksocks #raredisease #adventureruthie
22qSyndrome @22qSyndrome
377 Followers 1K Following Genetics Healthcare Patients Research mentalhealth Science patientcentered medicine awareness advocacy 22q syndrome immune neuro system development education
Global Genes @GlobalGenes
29K Followers 6K Following Empowering the Next Generation Rare Disease Advocate. Merged with RARE-X Dec. 2022. #CareAboutRare
Kostas @rodrigocalima
637 Followers 4K Following Executive Producer of the film 90 DAYS, BURDEN, All Boys Aren’t Blue
Gray Matters @GrayMatters6
210 Followers 623 Following When you hear hoofbeats, look for zebras. #RareDisease awareness. #FLNA #x_linked #PVNH #ACC #epilepsy #EDS
STUKKI 🧬 @stu_kki
544 Followers 893 Following 27才の息子（ALD:副腎白質ジストロフィー、X連鎖潜性遺伝）#adrenoleukodystrophy 発症直後(小学校入学直前)の臍帯血移植は生着せず。健常児→重症心身障害者（遷延性意識障害、ねたきり、胃瘻、在宅療養22年目) ALDは日本では難病ですが、欧米では新生児スクリーニングと造血幹細胞移植で発症自体を予防
ALD Raremark @ALD_Raremark
51 Followers 54 Following Page no longer active. Follow @RaremarkHealth for #ALD Our vision is to shape a world where all rare conditions are understood and treated. #RareDisease
Emma Downes @EmmaDownes13
5 Followers 30 Following
Henry's Journey @g1veup0rgivein
219 Followers 1K Following I am sharing my heart, my motherhood, and my love for my special needs son. Follow our journey. Insta: @giveuporgivein #momblogger #curecmd #muscledisease
AllStripes @_allstripes
3K Followers 1K Following Our mission is to unlock new treatments for people affected by rare disease.🚀
Governor Phil Murphy @GovMurphy
439K Followers 284 Following Former Governor of the Garden State. Husband to @FirstLadyNJ.
Archive: Governor And... @NYGovCuomo
2.0M Followers 600 Following The official administration account of Governor Andrew M. Cuomo. This account is archived. For updates from New York State, follow @nygov.
Helen Branswell 🇨�... @HelenBranswell
210K Followers 2K Following I cover infectious diseases @statnews. 2020 Polk winner. Nieman '11. She/her. #H5N1 #Ebola #Covid #polio #flu, #RSV. Send me news tips on Signal: HBranswell.01
Probably Genetic @ProbGenetic
596 Followers 751 Following Rare genetic conditions can take years for doctors to diagnose. #ProbablyGenetic is a personalized healthcare company working to help you find answers.
PharmaVoice @PharmaVoice
35K Followers 2K Following PharmaVoice is the leading community for life sciences leaders to share their stories, voices and ideas. Subscribe at https://t.co/VQzsyqTs0b
STAT @statnews
165K Followers 5K Following Reporting from the frontiers of health & medicine. Sign up for any of our newsletters here: https://t.co/CBx3GZBv31
CENTOGENE @Centogene
3K Followers 2K Following The essential biodata life science partner for rare and neurodegenerative diseases
Gray Matters @GrayMatters6
210 Followers 623 Following When you hear hoofbeats, look for zebras. #RareDisease awareness. #FLNA #x_linked #PVNH #ACC #epilepsy #EDS
NJDOH @NJDeptofHealth
42K Followers 805 Following Official Twitter account of the New Jersey Department of Health. Find us on Facebook, Instagram & LinkedIn. Contact us at https://t.co/QktfUZIohu
CRISPRcon @CRISPRcon
2K Followers 612 Following Conversations on science, society & the future of #geneediting. A program of the nonprofit non-advocacy @TheKeystoneCtr. Likes, retweets ≠ endorsements.
CRISPR News 🧬 @CRISPR_News
35K Followers 586 Following The latest CRISPR breakthroughs @crispr-news.bsky.social
Horizon @HorizonNews
5K Followers 2K Following Horizon Therapeutics is now part of Amgen. We encourage you to follow @Amgen. The Horizon X page is no longer active or monitored.
Rare Disease Team @RareDxResearch
5K Followers 120 Following A Canadian research team focusing on rare disease policy.
Becky M. Abbott, MPH @RareWashWoman
925 Followers 3K Following Wisconsin mom of 3 sons - advocating for #craniofacialcongenitalanomalies coverage #RareDisease #ELSACoalition #EnsuringLastingSmiles Act #Autism
Solving X @SolvingXorg
98 Followers 228 Following An organization on a mission to eliminate #Adrenoleukodystrophy (#ALD). A community of women, men and children who are affected by the rare disease.
NeuroBANK™ @neurobank
244 Followers 241 Following NeuroBANK™ - a patient-centric, accelerated research environment for collaboration, research, clinical care improvement and best clinical practices
EveryLife Foundation @EveryLifeOrg
7K Followers 3K Following Nonprofit org. dedicated to advancing the development of treatment & diagnostic opportunities for rare disease patients through science-driven public policy.
We Carry Kevan @WeCarryKevan
417 Followers 29 Following Believing in the inherent value of all people, we are redefining accessibility as a cooperative effort.
Genetic Alliance @GeneticAlliance
22K Followers 2K Following A non-profit network transforming health through genetics. 🧬 We promote openness in health systems, advocacy, empowerment, informed decisions, and access.
The Duchenne Registry @DuchenneReg
1K Followers 2K Following Help us #EndDuchenne! Join today at http://t.co/Keix9f5Cjb.
Brians Hope CT @BriansHopeCT
301 Followers 428 Following Through Brian’s Hope, a 501(c)(3) charitable foundation, we look forward to when no child experiences the devastation of adrenoleukodystrophy (ALD)
National Organization... @RareDiseases
40K Followers 3K Following #NORD has been the voice of the U.S. #RareDisease community for 40+ years strong. Official U.S. sponsor of #RareDiseaseDay. On Bluesky at @ https://t.co/D7PIT4k0Py
RDLA @RareAdvocates
6K Followers 2K Following A program of the EveryLife Foundation committed to growing the patient advocacy community and working collaboratively, thereby amplifying the patient voice!
Beyond the Diagnosis @BeyondtheDx
8K Followers 5K Following Beyond the Diagnosis unites art and science to raise awareness for children living with life-altering diseases.
EURORDIS-Rare Disease... @eurordis
31K Followers 1K Following An alliance of over 1,000 patient organisations working across borders and diseases to improve the lives of all people living with rare diseases.
RareConnect @RareConnect
18K Followers 5K Following 🌐Connecting #raredisease patients globally at https://t.co/v6rTTK0X6I. 💻Website help at @RareConnectSup.
BTMOC @ GWU @BTMOCgwu
44 Followers 205 Following Be the Match® manages the largest and most diverse bone marrow registry in the world, and are now on campus at The George Washington University!
Dare To Be Rare @liveararelife
361 Followers 434 Following Dare to be Rare is a 501(c)3 non profit creating a fundraising channel to help rare disease organizations reach beyond their communities https://t.co/22SiwcRL5t
karen harrison @karencamsmum
78 Followers 151 Following mum to 2 wonderful sons, Cameron and Glenn, project manager for the charity Ald Life the charity for Cameron's illness, Adrenoleukodystrophy
Curing Matt of ALD @CuringMattofALD
40 Followers 33 Following We're supporting Matthew Reimer & family in the search for a cure for his adrenoleukodystrophy (ALD), & seek to support research to benefit all boys affected.
Rare Diseases South A... @rarediseasessa
5K Followers 5K Following We're bridging the gap to improved quality of life, for a better tomorrow, for the #1in15 South Africans affected by rare diseases.
Troy Singleton @LD7Singleton
1K Followers 23 Following
Remember The Girls @remember_girls
2K Followers 766 Following Nonprofit organization aiming to break the stigma facing females impacted by X-linked conditions. #NotJustCarriers
Troy Singleton @Troy4NJ7
6K Followers 1K Following NJ State Senator, Majority Conference Chair, /G\, ΦΒΣ , #Eagles #Sixers #Phillies #Flyers
ULF @UlfUnited
509 Followers 35 Following The United Leukodystrophy Foundation is dedicated to helping children and adults who have leukodystrophy and assisting the family members and friends.
ALDConnect @ALDConnect
527 Followers 412 Following Consortium of advocates and experts advancing care for #adrenoleukodystrophy (#ALD) and #adrenomyeloneuropathy (#AMN) through innovation and collaboration.
Bob Wyborn @BobWyborn
92 Followers 232 Following To provide Research, Resources & Holistic Support for all those affected by any of the Leukodystrophies
Global Genes @GlobalGenes
29K Followers 6K Following Empowering the Next Generation Rare Disease Advocate. Merged with RARE-X Dec. 2022. #CareAboutRare
Genetix Biotherapeuti... @genetix_biotx
10K Followers 717 Following We’re transforming lives through curative #genetictherapies - building a future of lasting hope for patients and families. https://t.co/1dUPTEWcyx
PSR Orphan Experts (n... @PSRorphan
5K Followers 3K Following We’ve moved! PSR Orphan Experts is now Ergomed. To stay updated on future news, please follow us on the Ergomed Twitter page at https://t.co/mWUAHD63Iq
The Myelin Project @Myelin_Project
591 Followers 252 Following #Research #Advocacy & #FamilySupport for #Adrenoleukodystrophy (#ALD) & #Adrenomyeloneuropathy (#AMN) since 1989. #SaveTheBoys #NewbornScreening
Little Warriors ALD @CureTheBoys
27 Followers 30 Following Most people are familiar with this disease from the movie Lorenzo's Oil.
Bill @billgroel
48 Followers 360 Following Backyard Birder | Wannabe Yogi | Runner | Mentor for ALD families
Stop ALD Foundation @StopALD
366 Followers 11 Following The Stop ALD Foundation: Adrenoleukodystrophy (ALD) therapy development, awareness, & prevention. ALD was the disease highlighted in the film "Lorenzo
Chris Christie @GovChristie
778K Followers 961 Following Husband, proud father, former Gov and U.S. Attorney, Springsteen fan. Not stopping telling the truth. https://t.co/lgrYcbAR7k
Matthew's Dream @MatthewsDream
4 Followers 3 Following Matthew’s Dream “Find A Cure for ALD” ALD is AdrenoleukodystrophyYou might like