Cystinosis CRN
@cystinosiscrn
Cystinosis Research Network is dedicated to supporting research, providing family outreach & educating the public & medical communities about #cystinosis
ID: 811375033
http://cystinosis.org 08-09-2012 17:40:44
2,2K Tweet
800 Followers
1,1K Following
Susannah Fox
@susannahfox
Author, "Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care" (@MITPress 2024) She/her. SusannahRFox on bluesky &🧵& insta & gmail
Tim Walbert
@walbert20
Former chair, president, CEO, Horizon $HZNP, bought by $AMGN for $28.3 billion; sr. advisor, $AMGN; Boards: $SGMT $MIRM $IPSC, Cour, Odyssey, Latigo
Rare Disease Day
@rarediseaseday
29 February 2024 is Rare Disease Day. Raising awareness for patients, families and carers around the world that are affected by rare diseases. #RareDiseaseDay
EURORDIS-Rare Diseases Europe
@eurordis
An alliance of over 1,000 patient organisations working across borders and diseases to improve the lives of all people living with rare diseases.
Summit Daily News
@summitdailynews
Breaking news (#SummitDaily), local features (#ExploreSummit) and big stories from Summit County, CO and the Rocky Mountain region.
John J. Foxe
@johnnyfoxe
Editor-in-Chief, European Journal of Neuroscience @EJNeuroscience Director, The Del Monte Institute for Neuroscience @URneuroscience @IonaXCTF @UCDdublin #COYI
Cystinosis Research
@natalieswish
The Cystinosis Research Foundation’s (CRF) mission is to find better treatments and a cure for cystinosis, a rare genetic disease that destroys every organ.
Sanath Ramesh
@sanathkr_
Father of #RareDisease baby Raghav. Finding cure for GPX4 gene disorder 🧬 ; CEO @OpenTreatments_; Podcast raisingrare.fm Start. Pivot. Quit. Repeat
Ed Sheeran HQ
@edsheeran
Official Ed Sheeran HQ account. Azizam out now es.lnk.to/azizam
National Organization for Rare Disorders (NORD)
@rarediseases
National Organization for Rare Disorders (#NORD) is the voice of the U.S. #RareDisease community for 40+ years strong. Official U.S. sponsor of #RareDiseaseDay.
Mario Alamilla-Sánchez
@marioalamilla
Nephrologist. Internal Medicine. MD. MSc. Postgraduate Associate Professor. UNAM. Centro Médico Nacional “20 de Noviembre”, Mexico City.
The Patient-Centered Outcomes Research Institute
@pcori
PCORI funds patient-centered comparative clinical effectiveness research (CER). Links, RTs, favorite ≠ endorsements/advice.
Elaine
@emellotte
Trainee Educational and Child Psychologist | Good Enough Mama 🙂🙂
Cystinosis Ireland
@cystinosisirl
Irish registered charity dedicated to fundraising to support research into the rare disease Cystinosis. One day we will find a cure. #cystinosis. CRA# 20053796
Tomas Conefrey - Community Pharmacist
@conefreypharmac
I am a Community Pharmacist working in Pearse St, Dublin 2. A winner every day.
john sayer
@johnasayer
Amy Dockser Marcus
@amydmarcus
Health and science reporter for The Wall Street Journal, author of We the Scientists (2023) @riverheadbooks
Stephanie Fischer
@rarepov
#Raredisease patient advocate & #stroke survivor.🦓 Member of @PARareDisease. Opinions are my own.
Christy Greeley
@christygreeley
Rare Disease Advocate. University of Michigan Public Health. Mom to two of the best. Views are my own.
Lauren Albrecht
@thealbrecht_lab
Great minds don’t think alike.
Jason Greenberg
@jasonhenryg
Pediatric Nephrologist, Yale School of Medicine
American Society of Pediatric Nephrology
@aspneph
Promoting optimal care for children with kidney disease through advocacy, education & research; and disseminating advances in clinical practice & investigation
𝐉𝐨𝐬𝐞𝐩𝐡 𝐅𝐥𝐲𝐧𝐧, 𝐌𝐃
@drjosflynn
PGY-38 /Professor of Pediatrics @uwsomwwami /Editor in Chief, @Ped_Neph /Past-President, @ASPNeph / He/Him/His 🏳️🌈 /Also at @jostflynnmd.bsky.social
WTGF
@wtgf1
Over 45 years of staging international sporting events to showcase the success of transplantation #poweredbythegiftoflife
Elif Terzioğlu
@elfterzioglu
Hocaoğlu Tarım İşletmeleri ve Hayvancılık AŞ BAUFarm Gıda Mühendisi
Drew Landmeier
@drew_landmeier
@TuftsMedicine SVP & CMCO. News junkie in search of insightful nuggets of wisdom and marketing inspiration. #Travel #Foodie #Trekkie | Tweets/views my own.
Rare Patient Voice
@rarepatientvoic
We help clients find rare & non-rare disease patients & caregivers for research studies, & connect patients & caregivers with paid research opportunities.
Chuck Varnell
@cvarnellmd
Pediatrician, nephrologist @cincypedneph 🔬: kidney transplantation, learning health systems, informatics, acute rejection. Ask me about my BUN/Cr ratio ☦️
Neena Nizar
@neenanizar
Founder & Executive Director of The Jansen's Foundation. KOL,TEDx Speaker, Educator, Change Leader, thejansensfoundation.org Opinions are my own
Manel Menezes
@amanuelmenezes
Passionate about science, innovation and travelling. Tweets are my own. #Marketing #RareDiseases #Neuroscience #Pharma
Pediatric Nephrology
@ped_neph
Original clinical research and reviews on all aspects of acute & chronic diseases affecting kidney function in children. Official journal of IPNA @IPNA_PedNeph
Michelle Rheault
@rheault_m
Ped neph, Division director #NephJC Opinions my own COI:Travere,ELOXX,CSL Vifor, R3R,Aurinia,Otsuka. Not aspiring to be humble. (she/her) Pronounced “row”
Cambridge Rare Disease Network (CamRARE)
@camraredisease
making #rarediseases an everyday conversation bsky.app/profile/camrar…
[email protected]
@ugolikdc
Owner of Tahoe Blvd Chiropractic and Chiropractic Physician. Animal advocate
Effie Parks
@onceuponagene
Rare Disease Advocate | Award Winning Podcaster | Speaker | Captain Connection | RareMama to my sweet, Ford, who lives with #CTNNB1 🦓
RARE Revolution Magazine
@rarerevolutionm
Digital magazine giving a voice to those affected by rare conditions and the charities that support them. Contact us: [email protected]
Adam Johnson - DadVocate
@rarediseasedad
Dad w/#RareDisease | #Mito Advocate |🎙Host: #ParentsAsRare | Educator | Support | Kindness | Dad Jokes |#MentalHealthMatters | #BoiseState | ⚾️ @Cubs 🏈@49ers
Marni Cartelli
@purrfectly_rare
Rare Disease Patient, mom, & advocate. Danny's Dose Alliance Board Member. Know who you are & live a way you can be proud of.
Rareminds
@raremindsuk
Specialised mental health and wellbeing services for the rare disease community. bit.ly/rarementalheal…
Abby Turnwald (she/her)
@pedsgcabby
Pediatric genetic counselor, neurogenetics, advocate for the rare disease community, let’s talk about sibling health
Cystinosis of the Rockies
@cystinosisof
we are a page for People with Cystinosis, and caregivers also those with rare disorders, and transplant's.
RareRising
@rarerising_org
RareRising, is a 501c3 that delivers research, incubates emerging rare disease entities, and explores solutions to positively impact rare disease communities.
95, Rare Alliance Greece
@95rare
95, Rare Alliance Greece is a Greek non-profit Organization advocating for all who live with a rare & an undiagnosed #RareDisease 🔺 #ΣπάνιεςΠαθήσεις #Υγεία
Gabriel Cara-Fuentes
@carafuentes_g
Pediatric Nephrologist. Nationwide Children's Hospital. Trying to redefine idiopathic nephrotic syndrome and discover new therapies🇪🇸 🇺🇲🇵🇪
Christine B. Sethna, MD EdM
@newkidneysotb
Division Chief/ Director of Pediatric Fellowships. Interests: nephrotic syndrome & CV health. @Cohen_Childrens @NorthwellHealth @ZuckerSoM.
Darcy Weidemann
@drdarcyw
Pediatric nephrologist at @ChildrensMercy, APD of nephrology training program. Bibliophile, oenophile, and lover of renal physiology.
Sante Berlingerio
@s_berlingerio
Postdoc in Pediatric Nephrology at Amsterdam UMC
Cherqui Lab
@cherquilab
Lab of Dr. Stephanie Cherqui @UCSDHealth. Developing stem cell and gene therapy strategies for degenerative multi-systemic disorders.
Ashley M Gefen, MD MS
@ashleygefen
Pediatric Nephrologist • @PhxChildrens @UAZmedPhx Assistant Professor of Child Health • she/her/hers • Opinions are my own • 🏳️🌈🇨🇦🇺🇸
Chloe
@chloetiv1
Senior Specialist OT- specialist medicine (renal, gastro & acute)👩🏼⚕️ views my own
Siobhán Hendrick
@siobhhendrick
Passionate about making science more inclusive and keeping patient and public voices at the heart of health research #PPI. All views are my own
Oxford-Harrington Rare Disease Centre
@ohraredisease
Rare Disease Centre @UniofOxford in partnership with @HarringtonDI_UH @UHhospitals, accelerating cures for rare diseases
Psych Doc
@nomoretired2023
at the crossroads between #RareDisease, #Healthcare, and what-the-f%$%
Tunefrologopediatra
@tunefrologoped
Richard Baquero Rodriguez #TuNefrologoPediatra expresidente @aconepeoficial Professor @medicina_UdeA Pediatric Nephrologist @sanvicentefund @fresenius
The Student Voice Prize
@rdstudentvoice
Closed for entries! Annual, international essay competition for medical & nursing students focused on rare diseases📝💊🩺 Run by @RareBeacon & @M4RareDiseases
Rare Disease Clinical Trial Network, Ireland
@rare_trial
HRB-funded clinical trial network aiming to increase the quantity and quality of rare disease clinical trials in Ireland, keeping the patient voice at our core.
UCISkin
@uciskin
Official twitter account for UCI skin community. Follow along for updates, events, and the latest in skin research.
Perth Children's Hospital
@perthchildrens
PCH is Western Australia’s specialist paediatric hospital and trauma centre, providing medical care to children and adolescents up to 16 years of age.
Raising Rare
@raising_rare
Raising Rare focuses on two families’ stories as they navigate a largely uncharted path: the search for treatment, help, and strength raising a rare child.
Rare Disease Ghana Initiative
@rarediseasegh
A nonprofit organisation with the mission to improve the quality of life of persons living with #rarediseases in Ghana. #Awareness #Advocacy #Research #Support.
RAiN
@rainallireland
All-Ireland Rare Disease Inter-Disciplinary Network. Working collaboratively to create a positive impact for individuals with Rare Diseases and their families.
PubCaseFinder
@pubcasefinder
pubcasefinder.dbcls.jp is a web-based clinical decision support system for rare diseases, operated by a public institution. #RareDiseases #DiagnosticOdyssey
Swastika Sur
@surswastika
Florina Badea
@florinaralucab
NNNG
@nnnguk
A charitable group whose objectives are to promote education in nutrition and related subjects for all members of the nursing profession and the wider MDT
Landa Prifti
@landaprifti
Specialized Surgical Research Consultant, excited by every little discovery in the lab, like a successful surgery & very cool data helping move research ahead!
Stanford Pediatric Nephrology
@stanfordpedneph
Stanford Pediatric Nephrology #PedsNeph @StanfordPeds @StanfordChild #NephTwitter Tweets not medical advice.
DanielCarbajo
@danielcarbajo8
Post-doc at @IQAC_CSIC. Organic/peptide Chemist.