Alstrom Syndrome Int @AlstromInternat

alstrom.org 58 countries Joined June 2014

Tweets

11
Followers

69
Following

57
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0

NIH @NIH

12 years ago

A5 @NIHClinicalCntr is the largest hospital devoted to clinical research and a major resource for rare disease patients worldwide. #NIHChat

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Rare Disease Day @rarediseaseday

12 years ago

The 2015 video is OUT - bring people #livingwith a #raredisease out of the shadows: ow.ly/J8oHn

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Genetic Alliance @GeneticAlliance

12 years ago

Genetic Alliance CEO @sharonfterry attends @BarackObama #PrecisionMedicine Initiative announcement. Watch it live: whitehouse.gov/live

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National Organization for Rare Disorders (NORD) @RareDiseases

12 years ago

Involve the patient: #raredisease registries accelerate treatment & address knowledge gap about patients' daily lives bit.ly/1ICTMLG

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Rare Disease Day US @RareDayUS

12 years ago

50 days until #RareDiseaseDay 2015! Be heard, tell your story. bit.ly/RAREStory #HandprintsAcrossAmerica

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Alstrom Syndrome Int @AlstromInternat

12 years ago

The results are in! YOU DID IT!!!! You helped Alstrom Angels win $10,000! conta.cc/1sPINes Congratulations @AlstromAngels

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Alstrom Syndrome Int @AlstromInternat

12 years ago

Amazon donates to Alstrom Syndrome International when you shop @AmazonSmile. smile.amazon.com/ch/01-0515187 #YouShopAmazonGives

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Rare Disease Day @rarediseaseday

12 years ago

100 days until Rare Disease Day - the website for #RareDisease Day 2015 launched today! Add your events now! thndr.it/14mDkAq

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Cassie Johnston @CassieJohnstonJ

12 years ago

Are we part of your morning routine yet?? Get coffee...VOTE AGAIN! #constantcontact conta.cc/1x8WPWz

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Alstrom Syndrome Int @AlstromInternat

12 years ago

@AlstromInternat #DFGEntry

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CENA Project @CENAProject

12 years ago

CENAs disease advocacy partners: @AlstromInternat @AXYSinfo @jsrdf @pxe @NGF_Gaucher @HFIconnect @IBCResearch @DCOutreachInc @MLDfoundation

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Mahaz @Mahaz321325

1 Followers 59 Following

Laura Scallon @ScallonLaura

0 Followers 22 Following

Former NMR scientist, now a frog-lover, future... still a frog-lover!!
Studying ciligenesis and splicing in X. laevis in @WalentekLab #XenopusRules

CharlieSoftley @Charlie_Softley

26 Followers 58 Following Former NMR scientist, now a frog-lover, future... still a frog-lover!! Studying ciligenesis and splicing in X. laevis in @WalentekLab #XenopusRules

BDB is a network of organisations working together to improve the lives of people from marginalised communities and addressing health inequalities.

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.

Francesco Maffei @FMaffeiVr

1 Followers 14 Following Medical Doctor, Neurology Resident at UniVr

Kishor Subedi @84045710bd1c49c

35 Followers 102 Following

Georgie Robinson @GeorgieRobbo

182 Followers 327 Following

Florentine Strong @cylaneastrong

20 Followers 123 Following #pflegende Angehörige# #Rare disease# #Leben mit komplexer Behinderung# #Alström Syndrom# #Pflege am Limit#

(he/him) Cilia & mucociliary epithelia development, self-organization, and human airway diseases. 🏳️‍🌈 opinions own & plenty
@walenteklab on other platforms

Peter Walentek @WalentekLab

1K Followers 1K Following (he/him) Cilia & mucociliary epithelia development, self-organization, and human airway diseases. 🏳️‍🌈 opinions own & plenty @walenteklab on other platforms

Karla Mendoza @KarlaMe2619

2 Followers 39 Following

Karla Mendoza @Karladream2619

0 Followers 15 Following

Same but Different create thought-provoking exhibitions that stimulate conversation, change attitudes and empower individuals.

SamebutDifferent @SBDRareProject

2K Followers 3K Following Same but Different create thought-provoking exhibitions that stimulate conversation, change attitudes and empower individuals.

A new online publication that offers those affected by rare disease, disability & cancer the opportunity to unify & share our collective experience.

Rarity Life @raritylifemag

229 Followers 812 Following A new online publication that offers those affected by rare disease, disability & cancer the opportunity to unify & share our collective experience.

Hannah Siemer @HannahSiemer3

8 Followers 48 Following The blind mostly conservative nerd

Chris Knopik @ChrisK55374

235 Followers 355 Following Not a lot of posting, mainly stalking FF peeps. #sfb11 #sfb12 #sfb13 #sfb15 #wb2023 #wb2024

Leah Schinkel @LeahSchinkel

113 Followers 154 Following Proud to work for the NHS. All views are my own, not that anyone would want them.

Nakshatra @Nakshat96522225

0 Followers 10 Following

Naomi Wagner @Naomi_CGC

2K Followers 2K Following Ocular & rare disease genetic counselor 👁🧬 | @ShileyEye @UCSDHealth 🏥 | @BUMedicine & @pomonacollege 📚 | Opinions my own | she/her

Tamara @HeyItsJaii

263 Followers 1K Following

Selma Düzenli 🧬�... @duzenli_selma

59 Followers 809 Following Bildiğin doktor, MD, PhD, genetics, turkey, germany, ...🌍🌏🌎

خالد عامر @SimcFdl

13 Followers 72 Following

Scientist, molecular and genetic mechanisms of hypertension, kidney function, father, hubby, musician, music lover, climbing, runner, opinions are my own

POrtiz_313_Kidney @313Kidney

346 Followers 416 Following Scientist, molecular and genetic mechanisms of hypertension, kidney function, father, hubby, musician, music lover, climbing, runner, opinions are my own

Eleanor McKay, PhD @Eleanor_McKay_

115 Followers 193 Following Postdoctoral researcher in the @JourdainLab at @DIB_UNIL . Advocate for open science.

Simon McManus @SiMcmanus

3K Followers 4K Following Egg. Outdoorsy gen-X dad. 🔋⚡🚉 🚌 🚗 & 🚲 🚶 Tweets future transport, mobility, climate+ rare disease/disability stuff 👋

Lajada Emerson @lajada_emerson

37 Followers 508 Following 뮤지션을 위한 토크쇼 VMR / 100+ 게스트 출연 / 재즈 피아니스 트 . !(디제이 기린) 토크쇼 출연 문의

Elizabeth Loughery @LizLoughery1

10 Followers 100 Following

Valenti Marina @ValentiMarina2

2 Followers 55 Following

Leonardo Gatticchi @leogatti85

118 Followers 958 Following Biochemist and Biotechnologist/Addicted to music

Medical Doctor, Internal Medicine and Endocrinology, Pituitary Tumors, Acromegaly, rare diseases: Alstrom Syndrome, Wolfram syndrome.

Pietro Maffei @PietroMaffei3

27 Followers 23 Following Medical Doctor, Internal Medicine and Endocrinology, Pituitary Tumors, Acromegaly, rare diseases: Alstrom Syndrome, Wolfram syndrome.

EricBeresfordPharmD @EPrometic

0 Followers 2 Following

Barbara Strubell @bcstrubell

1 Followers 7 Following salon owner/hairdresser/artist

Francesca Dassie @DassieFrancesca

17 Followers 75 Following

hannah @hannah80555400

3 Followers 71 Following

Stefanie Riedel @Steffi1Berlin

3 Followers 87 Following

Philippa Giguère @philippa_tvi

107 Followers 503 Following Teacher of Students with Visual Impairments. District Vision Resource Teacher for SD43.

dr.ssa Elisabetta Iaf... @drssa_Iafrate

870 Followers 842 Following Biologo Nutrizionista a Roma, Pomezia e Anzio

Carlos Correa @CarlosC90867538

43 Followers 1K Following

Janet Siemer @JanetSiemer

8 Followers 141 Following

Robyn Michelle @Robynbird022

117 Followers 801 Following Occupational Therapist , free spirit, yogi, lover of travelling and a good glass of wine - all opinions my own

gabe_iacovino @IacovinoGabe

616 Followers 5K Following 🇹🇹🇮🇹 Student at Harvard College. 2024 Olympic hopeful for #teamUSA in the sport of Judo. #Blind Grappler.👨🏽‍🦯

Alström Syndroom @AlstromNL

25 Followers 137 Following Oprichster Alström syndroom The Netherlands

Life changing driving experiences for people with disabilities. Founded by Mike Newman, world's fastest blind man.
http://t.co/LHH5RRfUqi #charity

Speed of Sight @speedofsightorg

2K Followers 3K Following Life changing driving experiences for people with disabilities. Founded by Mike Newman, world's fastest blind man. http://t.co/LHH5RRfUqi #charity

Honoring Families, Supporting Charities. Gifting With Purpose is unique and powerful platform enabling you to send flowers and a personal card of love for free!

Gifting With Purpose @GiftingwPurpose

30 Followers 272 Following Honoring Families, Supporting Charities. Gifting With Purpose is unique and powerful platform enabling you to send flowers and a personal card of love for free!

“I Am Essential” unites diverse patient & community orgs. to ensure access to quality & affordable healthcare for millions of people enrolled in ACA coverage.

I Am Essential @I_Am_Essential

1K Followers 402 Following “I Am Essential” unites diverse patient & community orgs. to ensure access to quality & affordable healthcare for millions of people enrolled in ACA coverage.

Esther Koens-Krijnen @ekoens78

265 Followers 1K Following Trotse tante https://t.co/31WBTGjoTV

The second biennial Rare Diseases Conference (RareX 2018) will take place from 13 to 16 September 2018 at The Canvas Riversands in Fourways, Gauteng.

RareX @RareX_2018

786 Followers 2K Following The second biennial Rare Diseases Conference (RareX 2018) will take place from 13 to 16 September 2018 at The Canvas Riversands in Fourways, Gauteng.

Personalize My Medicine (PMM) keeps you updated on the latest in medical innovation, personalized medicine, and digital health. PMM is an Amazon Affiliate.

PersonalizeMyMed @MyPrecisionMed

1K Followers 5K Following Personalize My Medicine (PMM) keeps you updated on the latest in medical innovation, personalized medicine, and digital health. PMM is an Amazon Affiliate.

AssaiAlstrom @AssaiAlstrom

18 Followers 83 Following

Husband | Dad | Prof de français | Francophile | Aspiring Writer | Ordained Minister | Volunteer | Podcaster I ILACEP Dual Credit TOY ‘22 I 2024 HS TOY Nominee

Stephen Mack, EdD @DrMack74

CEO, Cambridge Rare Disease Network Founder and Director Alstrom Europe.
Founder of Alstrom Syndrome UK
@camraredisease

Kay @smeazel

624 Followers 457 Following CEO, Cambridge Rare Disease Network Founder and Director Alstrom Europe. Founder of Alstrom Syndrome UK @camraredisease

https://t.co/wvnPrSKzL1 is a voluntary Greek website set up to provide Ιnformation & raise Αwareness ab/ #RareDiseases
🔸fdr @ElinaMiaouli🔸#ΣπάνιεςΠαθήσεις #Υγεία #ΑμεΑ

SPANIOS.GR @SpaniosGr

1K Followers 1K Following https://t.co/wvnPrSKzL1 is a voluntary Greek website set up to provide Ιnformation & raise Αwareness ab/ #RareDiseases 🔸fdr @ElinaMiaouli🔸#ΣπάνιεςΠαθήσεις #Υγεία #ΑμεΑ

Official account of the U.S. Department of Health & Human Services | Follow @SecKennedy | For latest news follow @HHSResponse | MAHA 🇺🇸

HHS @HHSGov

1.7M Followers 37 Following Official account of the U.S. Department of Health & Human Services | Follow @SecKennedy | For latest news follow @HHSResponse | MAHA 🇺🇸

Stephen Mack, EdD @DrMack74

Rare Lives @RareLives

174 Followers 65 Following

CORD Mission: Provide a strong common voice to advocate for health policy and a healthcare system that works for those with rare disorders.#Canada4Rare

CORD @raredisorders

5K Followers 687 Following CORD Mission: Provide a strong common voice to advocate for health policy and a healthcare system that works for those with rare disorders.#Canada4Rare

A platform for sharing best practices for the management of #RareDisease @cnmr_ISS (Istituto Superiore Sanità) @DTaruscio @EUROPLANproject @Rare_Journal

RARE-Bestpractices @RAREBestP

486 Followers 241 Following A platform for sharing best practices for the management of #RareDisease @cnmr_ISS (Istituto Superiore Sanità) @DTaruscio @EUROPLANproject @Rare_Journal

La 1ère série documentaire sur les #maladiesrares qui montre le quotidien de malades sous un angle résolument humain et vous fait découvrir ces personnes rares!

Une Personne Rare @UnePersonneRare

348 Followers 441 Following La 1ère série documentaire sur les #maladiesrares qui montre le quotidien de malades sous un angle résolument humain et vous fait découvrir ces personnes rares!

UC San Francisco is the leading university exclusively focused on health. @UCSF on Instagram, Facebook, LinkedIn and YouTube

UC San Francisco @UCSF

74K Followers 430 Following UC San Francisco is the leading university exclusively focused on health. @UCSF on Instagram, Facebook, LinkedIn and YouTube

Rare Disease Team @RareDxResearch

5K Followers 119 Following A Canadian research team focusing on rare disease policy.

We're bridging the gap to improved quality of life, for a better tomorrow, for the #1in15 South Africans affected by rare diseases.

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.

Inserm @Inserm

148K Followers 356 Following Institut national de la santé et de la recherche médicale. La science pour la santé.

Compte officiel. L'AFM-Téléthon est une association de malades et parents de malades.

Retrouvez nos actus 👉 https://t.co/R9Df2Sn5gM

AFM-Téléthon @Telethon_France

112K Followers 4K Following Compte officiel. L'AFM-Téléthon est une association de malades et parents de malades. Retrouvez nos actus 👉 https://t.co/R9Df2Sn5gM

CHU de Lille @CHU_Lille

14K Followers 956 Following

Hôpital Necker AP-HP @hopital_necker

25K Followers 2K Following ⚠️ Compte officiel inactif

Service d'information, d'orientation et de soutien spécialisé dans les maladies rares et l'errance diagnostique associée - n° vert 0800 40 40 43

Maladies Rares Info S... @maladierareinfo

3K Followers 1K Following Service d'information, d'orientation et de soutien spécialisé dans les maladies rares et l'errance diagnostique associée - n° vert 0800 40 40 43

NEJM @NEJM

1.0M Followers 432 Following The New England Journal of Medicine is the world’s leading medical journal and website.

Genes in Life @GenesinLife

1K Followers 402 Following Explaining the genome, one base pair at a time. Part of the @GeneticAlliance family. http://t.co/dXgjtPJoUZ

@RareDiseasesEU is currently managed by Victoria Hedley, RD Policy Manager @ Newcastle University (formerly account 4 RD-ACTION & EUCERD JA). Views now my own

Rare Disease Policy @RareDiseasesEU

3K Followers 885 Following @RareDiseasesEU is currently managed by Victoria Hedley, RD Policy Manager @ Newcastle University (formerly account 4 RD-ACTION & EUCERD JA). Views now my own

Collectif de 240 associations de malades portant la voix de 3 millions de personnes concernées par 7 000 #maladiesrares en France.
Besoin d'aide ? 0800 40 40 43

Alliance maladies rar... @AllianceMR

4K Followers 2K Following Collectif de 240 associations de malades portant la voix de 3 millions de personnes concernées par 7 000 #maladiesrares en France. Besoin d'aide ? 0800 40 40 43

The reference portal and knowledge base for information on rare diseases and orphan drugs. Orphanet nomenclature, ORPHA codes, Orphanet RD Ontology @inserm

Orphanet @Orphanet

6K Followers 584 Following The reference portal and knowledge base for information on rare diseases and orphan drugs. Orphanet nomenclature, ORPHA codes, Orphanet RD Ontology @inserm

Disease InfoSearch @DxInfoSearch

532 Followers 442 Following @GeneticAlliance's DIS is the online resource for anyone in search of info & support for medical & genetic conditions.

Beacon is a UK-based charity that is building a united rare disease community with patient groups at its heart. Previously known as Findacure.

Beacon for Rare Disea... @RareBeacon

12K Followers 10K Following Beacon is a UK-based charity that is building a united rare disease community with patient groups at its heart. Previously known as Findacure.

has a rare life-threatening disease of Alstrom Syndrome, is a fairly good chess player; loves music, quizzes, eveything just about

Stephen Thacker @stevethacker

69 Followers 134 Following has a rare life-threatening disease of Alstrom Syndrome, is a fairly good chess player; loves music, quizzes, eveything just about

#RAREvolution #REACTCongress. This channel is no longer fed.
This channel is no longer fed. Follow us on
https://t.co/mi6vAAQBDb

RE(ACT) Community @react_community

2K Followers 476 Following #RAREvolution #REACTCongress. This channel is no longer fed. This channel is no longer fed. Follow us on https://t.co/mi6vAAQBDb

MD, Former Director of the National Centre for Rare Diseases @istsupsan . TW are personal views. RT≠endorsement https://t.co/TSPIwf9mOd…

Domenica Taruscio @DTaruscio

3K Followers 2K Following MD, Former Director of the National Centre for Rare Diseases @istsupsan . TW are personal views. RT≠endorsement https://t.co/TSPIwf9mOd…

Official account of the Italian National Centre for Rare Diseases.

Join us: @EUROPLANproject; @RAREBestP; @Rare_Journal; @DTaruscio;

#raredisease

NationalCentre forRD @cnmr_ISS

986 Followers 882 Following Official account of the Italian National Centre for Rare Diseases. Join us: @EUROPLANproject; @RAREBestP; @Rare_Journal; @DTaruscio; #raredisease

Wear your jeans, donate & transform the lives of people living
with genetic disorders. Find out more about us and all the
ways to get involved!

Jeans for Genes UK @jeansforgenes

15K Followers 9K Following Wear your jeans, donate & transform the lives of people living with genetic disorders. Find out more about us and all the ways to get involved!

Charity supporting families affected by genetic conditions providing the UKs only free Genetic Counsellor-Led Helpline

0800 987 8985 | helpline@genepeople.org

Gene People @GenePeopleUK

5K Followers 2K Following Charity supporting families affected by genetic conditions providing the UKs only free Genetic Counsellor-Led Helpline 0800 987 8985 | [email protected]

Official account on NIH grants and funding information: funding opportunities, policy news, & more. https://t.co/mt3gbuKOjg Engagement ≠ endorsement

NIH Funding @NIHFunding

55K Followers 27 Following Official account on NIH grants and funding information: funding opportunities, policy news, & more. https://t.co/mt3gbuKOjg Engagement ≠ endorsement

National MPS Society @MPSSociety

2K Followers 334 Following The National MPS Society exists to find cures for MPS and ML.

Sharon F. Terry @sharonfterry

3K Followers 1K Following Transforming health. #citizenscience @geneticalliance #thenewwe #freethedata #ihope

Rare Voices Australia @RareVoices

3K Followers 498 Following Rare Voices Australia (RVA) is Australia’s national peak body for Australians living with a rare disease.

2/28/19. #ShowYourStripes & join the movement in the US & around the world for #RareDiseaseDay. (Hosted in the US by @RareDiseases.)

Rare Disease Day US @RareDayUS

7K Followers 982 Following 2/28/19. #ShowYourStripes & join the movement in the US & around the world for #RareDiseaseDay. (Hosted in the US by @RareDiseases.)

NIH-funded network fostering collaborative research among 21 teams of researchers, patients, and clinicians, each focused on a group of rare diseases.

Rare Diseases Clinica... @rarediseasesnet

9K Followers 487 Following NIH-funded network fostering collaborative research among 21 teams of researchers, patients, and clinicians, each focused on a group of rare diseases.

Rare Diseases @CheckOrphan

18K Followers 5K Following CheckOrphan is the leading #news and information platform dedicated to #rarediseases and #orphandrugs

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.

28 February 2027 is Rare Disease Day. Raising awareness for patients, families and carers around the world that are impacted by rare diseases. #RareDiseaseDay

Rare Disease Day @rarediseaseday

42K Followers 3K Following 28 February 2027 is Rare Disease Day. Raising awareness for patients, families and carers around the world that are impacted by rare diseases. #RareDiseaseDay

Post-it @Postit

32K Followers 4K Following When your words matter most, say it with Post-it® Brand 💛

An international community for telomere biology disorders. Facebook: https://t.co/tSo9D8CRne | Instagram: TeamTelomere | Email: info@teamtelomere.org

Team Telomere @TeamTelomereInc

2K Followers 5K Following An international community for telomere biology disorders. Facebook: https://t.co/tSo9D8CRne | Instagram: TeamTelomere | Email: [email protected]

CENA is a PCORI funded project led by Genetic Alliance working with 10 orgs to expand a health data network. #RareDisease #ChronicIllness #Genetic #Research

CENA Project @CENAProject

1K Followers 2K Following CENA is a PCORI funded project led by Genetic Alliance working with 10 orgs to expand a health data network. #RareDisease #ChronicIllness #Genetic #Research

RareConnect @RareConnect

18K Followers 5K Following 🌐Connecting #raredisease patients globally at https://t.co/v6rTTK0X6I. 💻Website help at @RareConnectSup.

'Alström Syndrome is a rare genetic condition affecting every organ in the body. ASUK provides support & guidance for those affected.' Tweets by Catherine Lewis

Alström Syndrome UK @AS_UK

2K Followers 5K Following 'Alström Syndrome is a rare genetic condition affecting every organ in the body. ASUK provides support & guidance for those affected.' Tweets by Catherine Lewis

An alliance of over 1,000 patient organisations working across borders and diseases to improve the lives of all people living with rare 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.