Wilhelm Foundation
@wilhelmfound
For children with undiagnosed diseases - The #Undiagnosed . Works for World Congresses to start Programs (UDP) around the world to cooperate in Network UDNI
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http://www.wilhelmfoundation.org 24-01-2013 17:39:23
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United Nations
@un
Official account of the United Nations. For peace, dignity & equality on a healthy planet.
Duncan Robinson
@duncanrobinson
Bagehot columnist and political editor at The Economist. economist.com/topics/bagehot
FEDER | Enfermedades Raras
@feder_ong
👉🏻 Somos la esperanza de 3 millones de personas con #enfermedadesraras 🍀 Representamos a 422 organizaciones de pacientes y a 1.546 patologías poco frecuentes
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
UNESCO 🏛️ #Education #Sciences #Culture 🇺🇳
@unesco
Building peace where it starts - in the minds of women & men. Official Twitter account of UNESCO. #Education #Sciences #Culture #Communication #Information
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.
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@msm_os
Genetic Counselors
@geneticcouns
National Society of Genetic Counselors (NSGC) is the leading voice, authority and advocate for the genetic counseling profession. RT does not equal endorsement.
Dr. Olaf
@devpeds
Olaf Kraus de Camargo, Co-director @CanChild_ca - LinkedIn linkedin.com/in/krausdecama… 🇨🇦🇩🇪🇧🇷RT are not endorsements @[email protected]
UN Human Rights
@unhumanrights
The United Nations #HumanRights office is led by High Commissioner @volker_turk. Follow us on FB, IG & TikTok at unitednationshumanrights.
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.
EveryLife Foundation
@everylifeorg
Nonprofit org. dedicated to advancing the development of treatment & diagnostic opportunities for rare disease patients through science-driven public policy.
National Library of Medicine
@nlm_nih
Official account of the National Library of Medicine at @NIH. Serving scientists & society. More at @MedlinePlus and @NCBI. Privacy: go.usa.gov/x6k7C
OI Foundation
@oifoundation
Osteogenesis Imperfecta (OI) is a genetic bone disorder characterized by fragile bones that break easily. It is also known as “brittle bone disease.”
Kenneth Rothaus, MD
@drrothaus
Board Certified Plastic Surgeon, Immediate Past Chairman of the Emerging Trends Committee of the ASPS, and an authority on cosmetic and anti-aging procedures.
CDC
@cdcgov
CDC's official source for daily credible health & safety updates from Centers for Disease Control & Prevention. Privacy/comment policy: bit.ly/2MhQ6Hp
DISABILI ABILI
@bedisabiliabili
Personalizzazioni e distribuzione di ausili e prodotti per disabili. facebook.com/disabiliabili youtube.com/c/DisabiliAbil…
Uniamoci
@uniamocionlus
Uniamoci è un'Associazione di Promozione Sociale nata a Palermo nel 2008 con l'obbiettivo di promuovere l'inclusione sociale di giovani/adulti con disabilità
HUG
@hug_ge
Les Hôpitaux universitaires de Genève partagent avec vous les dernières actualités santé #santé #médecine #hôpital #genève
Matthew Kaminski
@kaminskimk
editor at large @politico, former EIC @politico, EIC & cofounder @politicoeurope
SWAN UK (syndromes without a name)
@swan_uk
SWAN UK (syndromes without a name) is run by @GeneticAll_UK offering support and information to families of children with undiagnosed conditions. #undiagnosed
ANGLE
@parsortix
The leading liquid biopsy company with the first FDA cleared medical device for the capture & harvest of intact CTCs from metastatic breast cancer patient blood
NICHD News
@nichd_nih
Official account of NICHD, part of @NIH. Healthy pregnancies, healthy children, healthy & optimal lives. Engagement≠endorsement
Rare Diseases Clinical Research Network
@rarediseasesnet
NIH-funded network fostering collaborative research among 20 teams of researchers, patients, and clinicians, each focused on a group of rare diseases.
CHI
@congenitalhi
Improving the lives of babies, children, and adults with hyperinsulinism (HI) by supporting HI families, research, and awareness to prevent brain damage & death
Gary Ross
@ukaesthetic
Consultant Plastic Reconstructive Aesthetic Surgeon, BAAPS, BAPRAS. Private Practice at BMI Alexandra and the Christie Clinic
Giuseppe novelli
@novellignovelli
Tor Vergata University of Rome, School of Medicine, University of Nevada Reno, President Lorenzini Foundation, Milan, Italy, Academia Europaea Member
Beacon for Rare Diseases
@rarebeacon
Beacon is a UK-based charity that is building a united rare disease community with patient groups at its heart. Previously known as Findacure.
Clinicspectrum
@clinicspectrum
A Hybrid Workflow Model™ for the #healthcare sector. One of our product suites is: #RPAspectrum - Possibilities Beyond Imagination #BotsMakeWorkEasy
Stephanie Fischer
@rarepov
#Raredisease patient advocate & #stroke survivor.🦓 Member of @PARareDisease. Opinions are my own.
luigi marino
@profluigimarino
Pediatric & Adult Eye Care, Laser,Refractive Surgery,Femtolasik, FemtoCataract, Macula , Retina,Dry Eye,Glaucoma,Dry Eye Expert
RarasNoInvisibles
@noinvisibles
Hablamos de salud, enfermedades raras, inclusion social y biomedicina. Escribe @Sombradoble Mas Información: [email protected]
EPIC LI
@epiclongisland
We provide services for individuals with intellectual/developmental disabilities, epilepsy & mental health challenges. We are Extraordinary People in Care!
Genomics Education
@genomicsedu
NHS England's Genomics Education Programme. Providing knowledge, skills and experience in #genomics #NHSgms #genomes100K #NHS #GenomicsConversation
HospitalSmarts
@hospitalsmarts
HospitalSmarts is your resource for successfully navigating your hospital experience.
amylynsantiagovolker
@amylynsantiagov
Mom of the first person in the world saved by DNA sequencing with 3 ultra rare dx’s. Two genetic Mom of child with ASD Wife of an Aspie and more
AELIP
@aelip_
Asociación de familiares y afectados por Lipodistrofia España, Europa y Latinoamérica
FDNA
@fdna
Detecting rare disease early with the help of AI
Shirley Bracken
@shirley_bracken
Craniofacial Projects Manager (former CNS & PICU Nurse) @cranioIE Children's Health Ireland at Temple Street Dublin Ireland All views are my own
Genetics in Medicine
@gimjournal
Genetics in Medicine, an official journal of @TheACMG Site use policy: bit.ly/gimconduct. Cover image by istockphoto.com user fanjianhua.
FMF ESPAÑA
@fmfspain
Cuenta oficial de la Asociación de Fiebre Mediterránea Familiar y Síndromes Autoinflamatorios de España: FMF ESPAÑA
IRDiRC
@irdirc
#IRDiRC is a consortium of #RareDisease #research funding agencies n stakeholders. RTs shares likes ≠ endorsement. Account managed by IRDiRC Scient. Secretariat
Rare Disorders NZ
@raredisordersnz
Rare Disorders NZ is the connector hub and collective voice of rare disorders in New Zealand.
FOXG1UK
@foxg1uk
Help us spread the word and find a cure for this rare genetic, neurological syndrome . For more info visit our website below
Rare Disease Review
@raredrev
The Medical Journal That Anyone Can Understand. Leader in #rarediseases & #knowledgetranslation. #zebrastrong
Rare Moms
@raremoms
building an internet place where #raremoms get featured, find each other and inspire change. #gigantism advocate and #raremom @pattimhall #rarekids website soon
ECRIN
@ecrin_eric
ECRIN's mission is to support the conduct of multinational clinical research in Europe
Udninternational
@udniss
The Undiagnosed diseases network international (UDNI) was established in 2014, (UDNI); it was founded by five participants countries including Italy.
9p Minus Network
@9p_minus
The Chromosome 9pminus Network is a nonprofit, parent-based support group with a mission to improve the lives of families affected by 9p Deletion Syndrome.
Africa_Rare
@africa_rare
A group of rare disease focused support groups who aim to create an international umbrella body to move rare disease policy forward across Africa
tweetWorthey
@tweetworthey1
Dr. Liz Worthey's software development & informatics team #Bigdata #Genomics #WGS #raredisease
PatchSA - Palliative Care for Children SA
@patchpalliative
PatchSA works to ensure the integration of palliative care for children into SA health systems through advocacy, information sharing, resources and education.
Retina International
@retina_int
Global umbrella group of patient-led organisations funding & supporting research into cures for rare, inherited & age related retinal dystrophies RCN: 20206322
Ataxia and Me CIO 1184030
@ataxia_and_me
#Ataxia is a #raredisease affecting #Balance #Speech and #Coordination #Patients Helping Patients #MovementDisorder #Health #Medical #pharma
BOKS vzw
@boks_vzw
Belgische Organisatie voor Kinderen en volwassenen met een Stofwisselingsziekte
Sparklers Foundation
@sparklershelp
Does a member of your family have autism or related condition? Contact us to find out how we can help :) #Inclusion #Advocacy #Education #Training #Respite
Office for Rare Conditions Glasgow
@orcglasgow
The Office for Rare Conditions aims to raise awareness of rare conditions, enhance the quality of care provided & promote participation in multi-centre research
António Guterres
@antonioguterres
Secretary-General of the @UN. We will never, ever give up making this world better for everyone, everywhere.
Ergomed
@ergomedplc
Ergomed is a full-service #clinicalresearch organisation specialising in the areas of #oncology #neurology #respiratory and #rarediseases
CareRare Connects
@define_vitality
#CareRare #RareDisease, #Share, #Collaborate, #TeamUp, #JoinTogether, #Empowerment, #CureRare, #Vitality, #ConnectRare
STELLAR Study
@stellarstudy
Dedicated team tweeting about #AnaplasticAstrocytoma #braintumor #glioma #BTSM #BrainTumorThursday #braincancer #CTSM #clinicaltrials #HCSM #cancer #astrocytoma
#Aggrecan / #ACAN Gene Mutation-Looking For Others
@acangenevariant
#Aggrecan #Gene: #EarlyOnset #Osteoarthritis #OA #Hip #FAI #HalluxRigidus #Familial #OsteoChondritisDissecans & #HLAB27 #USpA FHx= #Dementia & #Parkinsonism
Tala
@talabthegc
genetic counselor • opinions shared here are my own • she/they • #GCChat
Stanford CUD
@stanford_cud
Stanford Center for Undiagnosed Diseases. Hospital affiliate of the Undiagnosed Diseases Network @UDNconnect. #raredisease #science #genetics #genomics