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pulseinfoframe's profile picture. Accelerating science and research with real world evidence, from real patients, in real time. #realworldevidence #raredisease #cancer

Pulse Infoframe

@pulseinfoframe

Accelerating science and research with real world evidence, from real patients, in real time. #realworldevidence #raredisease #cancer

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Pulse Infoframe
 @pulseinfoframe
Jun 2, 2023

With the Pulse Platform, life sciences companies can target RWD needs to address unmet evidence generation needs, including creating an external control arm in #ClinicalTrials. pulseinfoframe.com/wp-content/upl… #RealWorldData #NaturalHistoryStudy #PricingReimbursement

pulseinfoframe's tweet image. With the Pulse Platform, life sciences companies can target RWD needs to address unmet evidence generation needs, including creating an external control arm in #ClinicalTrials. pulseinfoframe.com/wp-content/upl… #RealWorldData #NaturalHistoryStudy #PricingReimbursement
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RareRevolutionM's profile picture.
RARE Revolution Magazine®
@RareRevolutionM
Dec 22, 2023

Prof Trautwein is a professor at University Hospital @RWTH Aachen in Germany. He discusses the importance of early intervention in #PrimaryBiliaryCholangitis (#PBC), the challenges with diagnosis, the improved prognosis and unmet needs. rarerevolutionmagazine.com/digitalspotlig…

RareRevolutionM's tweet image. Prof Trautwein is a professor at University Hospital @RWTH Aachen in Germany. He discusses the importance of early intervention in #PrimaryBiliaryCholangitis (#PBC), the challenges with diagnosis, the improved prognosis and unmet needs. rarerevolutionmagazine.com/digitalspotlig…
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RARE Revolution Magazine®
@RareRevolutionM
Dec 22, 2023

LaToya’s diagnosis of #PrimaryBiliaryCholangitis (#PBC) explained her fatigue. Managing that symptom is a constant challenge that forces her to make compromises—which those closest to her can find hard. Here she explains how fatigue shapes her new normal rarerevolutionmagazine.com/digitalspotlig…

RareRevolutionM's tweet image. LaToya’s diagnosis of #PrimaryBiliaryCholangitis (#PBC) explained her fatigue. Managing that symptom is a constant challenge that forces her to make compromises—which those closest to her can find hard. Here she explains how fatigue shapes her new normal rarerevolutionmagazine.com/digitalspotlig…
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RARE Revolution Magazine®
@RareRevolutionM
Dec 24, 2023

Special thanks to our wonderful contributors for providing their impactful perspectives on #PrimaryBiliaryCholangitis (#PBC) and to GSK for sponsoring this inspiring series. To access these #DigitalSpotlight articles, visit our site here: rarerevolutionmagazine.com/digital_spotli… #RareDisease

RareRevolutionM's tweet image. Special thanks to our wonderful contributors for providing their impactful perspectives on #PrimaryBiliaryCholangitis (#PBC) and to GSK for sponsoring this inspiring series. To access these #DigitalSpotlight articles, visit our site here: rarerevolutionmagazine.com/digital_spotli… #RareDisease
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RARE Revolution Magazine®
@RareRevolutionM
Dec 19, 2023

Robert Mitchell-Thain, CEO explains @PBCFoundation’s work driven by the goal that, one day, everybody will be able to access the care pathway that is right for them.#PBC #PrimaryBiliaryCholangitis #RareDisease #RareLiver rarerevolutionmagazine.com/digitalspotlig…

RareRevolutionM's tweet image. Robert Mitchell-Thain, CEO explains @PBCFoundation’s work driven by the goal that, one day, everybody will be able to access the care pathway that is right for them.#PBC #PrimaryBiliaryCholangitis #RareDisease #RareLiver rarerevolutionmagazine.com/digitalspotlig…
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RARE Revolution Magazine®
@RareRevolutionM
Dec 20, 2023

The care pathway and unmet needs in #PrimaryBiliaryCholangitis, a rare autoimmune disease of the liver: an interview and overview of #PBC with Prof Singal, professor at the University of South Dakota, Sanford School of Medicine, US. rarerevolutionmagazine.com/digitalspotlig… #RareDisease

RareRevolutionM's tweet image. The care pathway and unmet needs in #PrimaryBiliaryCholangitis, a rare autoimmune disease of the liver: an interview and overview of #PBC with Prof Singal, professor at the University of South Dakota, Sanford School of Medicine, US. rarerevolutionmagazine.com/digitalspotlig… #RareDisease
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RARE Revolution Magazine®
@RareRevolutionM
Dec 21, 2023

Ingo van Thiel is a patient rep for @Leberhilfe e.V. (German Liver Aid). He explains the enormous value of listening carefully to what the #PBC community says about its unmet needs—even a single word can have the power to improve patients’ lives rarerevolutionmagazine.com/digitalspotlig…

RareRevolutionM's tweet image. Ingo van Thiel is a patient rep for @Leberhilfe e.V. (German Liver Aid). He explains the enormous value of listening carefully to what the #PBC community says about its unmet needs—even a single word can have the power to improve patients’ lives rarerevolutionmagazine.com/digitalspotlig…
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RARE Revolution Magazine®
@RareRevolutionM
Dec 18, 2023

#PrimaryBiliaryCholangitis (PBC) is a rare, long-term, potentially debilitating, autoimmune liver disease. Read more about the CHAPTER study collecting real-world data on the itch associated with rare liver disease. rarerevolutionmagazine.com/digitalspotlig… #PBC #RareDisease

RareRevolutionM's tweet image. #PrimaryBiliaryCholangitis (PBC) is a rare, long-term, potentially debilitating, autoimmune liver disease. Read more about the CHAPTER study collecting real-world data on the itch associated with rare liver disease. rarerevolutionmagazine.com/digitalspotlig… #PBC #RareDisease
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Pulse Infoframe
 @pulseinfoframe
Nov 1, 2023

Join our research partners from the Global Melanoma Research Network next week at the Society for Melanoma Research Congress at their poster (P-070) that showcases the real-world effectiveness of adjuvant systemic therapy in cutaneous melanoma. #MelanomaResearch #MelanomaSociety

pulseinfoframe's tweet image. Join our research partners from the Global Melanoma Research Network next week at the Society for Melanoma Research Congress at their poster (P-070) that showcases the real-world effectiveness of adjuvant systemic therapy in cutaneous melanoma. #MelanomaResearch #MelanomaSociety
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Pulse Infoframe
 @pulseinfoframe
Nov 1, 2023

Our Founder and CEO Dr. Femida Gwadry-Sridhar will be speaking at the #WODC2023 with @RareRevolutionM about the best strategies for study enrollment, patient engagement and recruitment Thursday November 2nd at 10:40 AM. @orphan_drugs #RareDisease

pulseinfoframe's tweet image. Our Founder and CEO Dr. Femida Gwadry-Sridhar will be speaking at the #WODC2023 with @RareRevolutionM about the best strategies for study enrollment, patient engagement and recruitment Thursday November 2nd at 10:40 AM. @orphan_drugs #RareDisease
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Pulse Infoframe
 @pulseinfoframe
Oct 30, 2023

We will be presenting a new poster with data from our Global Melanoma Research Network (GMRN) at the Society for Melanoma Research congress next week. Stop by poster P-070 to learn about real-world effectiveness of adjuvant systemic therapy in cutaneous melanoma. #Melanoma

pulseinfoframe's tweet image. We will be presenting a new poster with data from our Global Melanoma Research Network (GMRN) at the Society for Melanoma Research congress next week. Stop by poster P-070 to learn about real-world effectiveness of adjuvant systemic therapy in cutaneous melanoma. #Melanoma
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Pulse Infoframe
 @pulseinfoframe
Sep 22, 2023

Today is #WorldNarcolepsyDay. We are committed to the narcolepsy community. You can find out more about our work with our partners and the CATNAP® registry here: pulseinfoframe.com/catnap/

pulseinfoframe's tweet image. Today is #WorldNarcolepsyDay. We are committed to the narcolepsy community. You can find out more about our work with our partners and the CATNAP® registry here: pulseinfoframe.com/catnap/
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Pulse Infoframe
 @pulseinfoframe
Sep 13, 2023

Our founder and CEO, Dr. Femida Gwadry-Sridhar, is attending the 2nd Asia CDKL5 workshop in Japan September 21-22 as a speaker to give insights into the CDD registry, which uses the Pulse Platform. Scan the QR code to sign up virtually. #CDKL5 #CDD #CDKL5DeficiencyDisorder

pulseinfoframe's tweet image. Our founder and CEO, Dr. Femida Gwadry-Sridhar, is attending the 2nd Asia CDKL5 workshop in Japan September 21-22 as a speaker to give insights into the CDD registry, which uses the Pulse Platform. Scan the QR code to sign up virtually. #CDKL5 #CDD #CDKL5DeficiencyDisorder
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Pulse Infoframe
 @pulseinfoframe
Sep 11, 2023

Next in our Meet Our Team series is Katie Crosby, our clinical project manager. Katie is a certified genetic counselor with 10+ years’ experience in clinical care and rare disease research. She also worked in pharma planning a clinical trial for an ultra-rare disease.

pulseinfoframe's tweet image. Next in our Meet Our Team series is Katie Crosby, our clinical project manager. Katie is a certified genetic counselor with 10+ years’ experience in clinical care and rare disease research. She also worked in pharma planning a clinical trial for an ultra-rare disease.
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pulseinfoframe's profile picture.
Pulse Infoframe
 @pulseinfoframe
Sep 8, 2023

Our founder and CEO, Dr. Femida Gwadry-Sridhar, is attending the 2nd Asia CDKL5 workshop in Japan September 21-22 as a speaker to give insights into the #CDD registry, which uses the Pulse Platform. Attend virtually by scanning the QR code. #CDKL5 #CDKL5DeficiencyDisorder

pulseinfoframe's tweet image. Our founder and CEO, Dr. Femida Gwadry-Sridhar, is attending the 2nd Asia CDKL5 workshop in Japan September 21-22 as a speaker to give insights into the #CDD registry, which uses the Pulse Platform. Attend virtually by scanning the QR code. #CDKL5 #CDKL5DeficiencyDisorder
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pulseinfoframe's profile picture.
Pulse Infoframe
 @pulseinfoframe
Sep 7, 2023

Last year, data from our Global Melanoma Research Network were published in @CurrentOncology Learn more about how the #RealWorldData generated from the Pulse Platform helped researchers track the quality of immunotherapies here: mdpi.com/1523500

pulseinfoframe's tweet image. Last year, data from our Global Melanoma Research Network were published in @CurrentOncology Learn more about how the #RealWorldData generated from the Pulse Platform helped researchers track the quality of immunotherapies here: mdpi.com/1523500
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pulseinfoframe's profile picture.
Pulse Infoframe
 @pulseinfoframe
Aug 11, 2023

There are five important differentiators that we deliver in our evidence generation platform to overcome the challenges of multi-site, international deployment, and data collection. Learn more here: bit.ly/PulsePlatform #PatientRegistries #DataScience #SaaS

pulseinfoframe's tweet image. There are five important differentiators that we deliver in our evidence generation platform to overcome the challenges of multi-site, international deployment, and data collection. Learn more here: bit.ly/PulsePlatform #PatientRegistries #DataScience #SaaS
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pulseinfoframe's profile picture.
Pulse Infoframe
 @pulseinfoframe
Aug 10, 2023

#Swifties rejoiced when Taylor Swift dropped #SpeakNowTaylorsVersion last month. Three songs on the album are #CPR worthy? “Sparks Fly” “Speak Now” and “Dear John” all fall between the necessary 100-120 BPM range to adequately perform CPR! Learn more here: simonsheart.org

pulseinfoframe's tweet image. #Swifties rejoiced when Taylor Swift dropped #SpeakNowTaylorsVersion last month. Three songs on the album are #CPR worthy? “Sparks Fly” “Speak Now” and “Dear John” all fall between the necessary 100-120 BPM range to adequately perform CPR! Learn more here: simonsheart.org
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pulseinfoframe's profile picture.
Pulse Infoframe
 @pulseinfoframe
Aug 9, 2023

Join @myrovlytis at this year's BHD and Folliculin Research Symposium on October 13 and 14, 2023. Tickets are available for both in-person and online attendance eventbrite.co.uk/e/bhd-and-foll… #KidneyCancer #Symposium #Research #Pneumothorax #LungHealth #BirtHoggDube

pulseinfoframe's tweet image. Join @myrovlytis at this year's BHD and Folliculin Research Symposium on October 13 and 14, 2023. Tickets are available for both in-person and online attendance eventbrite.co.uk/e/bhd-and-foll… #KidneyCancer #Symposium #Research #Pneumothorax #LungHealth #BirtHoggDube
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pulseinfoframe's profile picture.
Pulse Infoframe
 @pulseinfoframe
Aug 4, 2023

Do not overlook how you plan to use the data collected for your registry: data are a tool that actively contributes to your cause, not a toolbox of hundreds of tools you’ll never use. A #DataScientist can help: pulseinfoframe.com/2020/12/07/und… #DataScience #RealWorldData

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pulseinfoframe's profile picture.
Pulse Infoframe
 @pulseinfoframe
Aug 3, 2023

Generating strong #RWE means leveraging a unique network of sites and KOLs to support medical therapy development and our integrated technology platform in 20+ disease areas including #Oncology, #RareDisease and #ChronicConditions. Visit pulseinfoframe.com for more info.

pulseinfoframe's tweet image. Generating strong #RWE means leveraging a unique network of sites and KOLs to support medical therapy development and our integrated technology platform in 20+ disease areas including #Oncology, #RareDisease and #ChronicConditions. Visit pulseinfoframe.com for more info.
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Ben Franklin

@bftp_sep
rarediseaseday's profile picture. 29 February 2024 is Rare Disease Day. Raising awareness for patients, families and carers around the world that are affected by rare diseases. #RareDiseaseDay

Rare Disease Day

@rarediseaseday
techguy's profile picture. Community Organizer, Entrepreneur, Writer, Conference Organizer, Keynote Speaker. See also @healthcarescene @EXPOdotHealth #HITsm #HITMC #hcldr etc etc etc.

John Lynn

@techguy
myrovlytis's profile picture. Medical research charity driven by our ambition to cure rare diseases We manage @BHD_Foundation & @OsteosarcomaNow #RareDisease #rarecancer

Myrovlytis Trust

@myrovlytis
RareDiseases's profile picture. #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

National Organization for Rare Disorders (NORD)

@RareDiseases
EpilepsyFdn's profile picture. #EpilepsyAwareness & Education | FREE #SeizureFirstAid Certification | 24/7 Helpline (1-800-332-1000) | Unwavering ally for people w/ #epilepsy & #seizures.

Epilepsy Foundation of America

@EpilepsyFdn
Ring20UK's profile picture. Non-profit organisation supporting families, individuals and professionals who are affected by or who come into contact with Ring chromosome 20 syndrome - r(20)

Ring20UK

@Ring20UK
RarePOV's profile picture. #Raredisease patient advocate & #stroke survivor.🦓 Member of @PARareDisease. Opinions are my own.

Stephanie Fischer

@RarePOV
Ataxia_and_Me's profile picture. #Ataxia is a #raredisease affecting #Balance #Speech and #Coordination #Patients Helping Patients #MovementDisorder #Health #Medical #pharma

Ataxia and Me CIO 1184030

@Ataxia_and_Me
GeneticAll_UK's profile picture. National charity working for everyone affected by genetic, rare and undiagnosed conditions. We run the campaign Rare Disease UK and support network @SWAN_UK.

Genetic Alliance UK

@GeneticAll_UK
InterSystems's profile picture. Leading global provider of data technology in #healthcare, #finserv, & logistics. We provide our clients with 24/7 award-winning support.

InterSystems

@InterSystems
22Q11_Ireland's profile picture. Parent group raising awareness of #22q Working toward integrated care for 22qDS & individually rare collectively common #RareDiseases. Tweets AnneL CHY 17647

22Q11 Ireland

@22Q11_Ireland
ACureInSight1's profile picture. A Cure In Sight is a non-profit organization founded to raise Ocular Melanoma awareness and to help OM patients find/pay for the treatments that they need.

A Cure In Sight

@ACureInSight1
BHD_Foundation's profile picture. Your resource for Birt-Hogg-Dubé Syndrome: research and support. Managed by @myrovlytis #RareDisease #Pneumothorax #KidneyCancer #BHDSyndrome

BHD Foundation

@BHD_Foundation
ISPORorg's profile picture. ISPOR is the leading global scientific and educational organization for health economics and outcomes research (#HEOR). Retweets do not equal endorsements

ISPOR

@ISPORorg
ot_and_me's profile picture. OT and Me aims to support every Canadian learning about Occupational Therapy and how Occupational Therapists can promote health and wellbeing.

Occupational Therapy (OT) and Me

@ot_and_me
PHWorg's profile picture. The national voice solely dedicated to protecting children and young adults from Sudden Cardiac Arrest (SCA) and preventable Sudden Cardiac Death (SCD).

Parent Heart Watch

@PHWorg
EPSaveALife's profile picture. The Eric Paredes Save A Life Foundation seeks to prevent Sudden Cardiac Death in teens through free heart screenings, AED placement and CPR/AED training.

EP Save A Life

@EPSaveALife
GregoryPastores's profile picture.

Gregory M. Pastores

@GregoryPastores
RobinLachmann's profile picture.

Robin Lachmann

@RobinLachmann
DerralynnH's profile picture.

Derralynn Hughes

@DerralynnH
HGTJournal's profile picture. The first journal devoted to the science, technology and clinical application of human gene therapy. Established in 1990. Editor-in-Chief: Terry Flotte.

Human Gene Therapy

@HGTJournal
reena_pharm's profile picture. GP Practice Pharmacist, Independent Prescriber, CPPE Education Supervisor, Wife, Mum! All views are my own.

Reena Sharma

@reena_pharm
scispace's profile picture. Making research more accessible by the day | https://t.co/KBTUcfNkZI Listen to Podcast: https://t.co/ag0pphxmgS

SciSpace

@scispace
tsa_charity's profile picture. Dedicated to improving the diagnosis, treatment & care of those living with #CACNA1C-related disorders inc. #TimothySyndrome and #LongQT8. @cacna1c.bsky.social

Timothy Syndrome Alliance (TSA)

@tsa_charity
RonBorges's profile picture.

Ron Borges

@RonBorges
RDExeter's profile picture. Prof Emma Baple Prof Andrew Crosby & team @ExeterMed defining the genomic & molecular basis of rare diseases. https://t.co/tOiyuM6pYT

Exeter Rare Disease

@RDExeter
rsheeds22's profile picture.

Ryan Sheedy

@rsheeds22
Friedreichsatax's profile picture. We are dedicated to sharing the latest news, research, and Friedreich’s ataxia patient perspectives.

Friedreich's Ataxia News

@Friedreichsatax
anna_dickins0n's profile picture. Head of Strategy to @nicolablackwood | Ex @imperial_IGHI @ukonward @Policy_Projects | Expect Yes, Minister & The West Wing quotes | Views my own

Anna Dickinson

@anna_dickins0n
uksciencechief's profile picture. Tweets from the Government Office for Science, headed by the UK Government Chief Scientific Adviser Prof Dame Angela McLean. Tweets from the GCSA marked as 'AM'

Government Office for Science

@uksciencechief
Policy_Projects's profile picture. Public Policy Projects (PPP) is an organisation operating at the heart of health and life sciences policy delivery through convening events, reports and news.

Public Policy Projects

@Policy_Projects
RareDiseasesIE's profile picture. Equitable access to healthcare and opportunity for all! RDI - advocating for equitable access for the 300,000 people in Ireland living with rare diseases.

Rare Diseases Ireland

@RareDiseasesIE
RareAdvocacy's profile picture. Network of people with #RareDisease #LivedExperiences dedicated to evolving the #LivingRare experience into opportunities for the global community to thrive.

Rare Advocacy Movement

@RareAdvocacy
congenitalphp's profile picture. Panhypopituitarism Advocacy website and Facebook Page. Share your story by visiting our website and use the hashtag #panhypopituitarism to be retweeted

Panhypopituitarism Stories

@congenitalphp
nworth_ctu's profile picture. UKCRC registered Clinical Trials Unit in @MedicalBangor, @BangorUni. We specialise in the design, conduct, analysis & reporting of clinical trials.

NWORTH Clinical Trials Unit

@nworth_ctu
chromosome8p's profile picture. Project 8p is a non profit committed to finding treatment with translational research, advocacy and data sharing for Chromosome 8p disorders.

Project 8p

@chromosome8p
CPathInstitute's profile picture. C-Path leads collaborations that accelerate drug development, advancing better treatment for people worldwide.

Critical Path Institute (C-Path)

@CPathInstitute
sickboypodcast's profile picture. Hosts Jeremie, Brian & Taylor shoot the shit about illness & laugh about the absurdity of life!

Sickboy Podcast

@sickboypodcast
NiemannPickUK's profile picture. Niemann-Pick UK is a charity providing support to those affected by Niemann-Pick Disease a group of rare, inherited, life-limiting diseases.

NPUK

@NiemannPickUK
ParadigmGlobal's profile picture. Independent Business Information provider specialising in the Pharmaceutical, Oil and Gas, Logistics &Supply Chain, Renewable energy and Infrastructure sectors

ParadigmGlobalEvents

@ParadigmGlobal
rarediseasesnet's profile picture. NIH-funded network fostering collaborative research among 19 teams of researchers, patients, and clinicians, each focused on a group of rare diseases.

Rare Diseases Clinical Research Network

@rarediseasesnet
rarediseasefdn's profile picture. Changing the lives of patients affected by rare & undiagnosed diseases through social support, advocacy & treatment-focused research. https://t.co/qWTTVoKeyL

RareDiseaseFdn

@rarediseasefdn
CheckOrphan's profile picture. CheckOrphan is the leading #news and information platform dedicated to #rarediseases and #orphandrugs

Rare Diseases

@CheckOrphan
RareGenomics's profile picture. RGI is a non-profit organization that provides research to families in need of diagnosis & treatment for rare genetic diseases.

Rare Genomics

@RareGenomics
RareShareOrg's profile picture. RareShare is a social platform building communities for patients, families, and healthcare professionals affected by rare medical disorders.

RareShare

@RareShareOrg
orphan_drugs's profile picture. The World Orphan Drug Congress is an award-winning orphan drugs & rare diseases event.

World Orphan Drug Congress

@orphan_drugs
OrphanConf's profile picture. Get regular updates on #WorldOrphanUSA! June 9-11, 2026 | Boston Convention & Exhibition Center

World Orphan Drug Congress USA

@OrphanConf
PrimeGlobalBuzz's profile picture. We are Prime. We accelerate progress. One diverse, worldwide, highly skilled team, sharing a vibrant, dynamic, open culture.

Prime

@PrimeGlobalBuzz
NAF_Ataxia's profile picture. Our mission is to accelerate the development of treatments and a cure while working to improve the lives of those living with Ataxia.

National Ataxia Foundation

@NAF_Ataxia
rarediseaseuk's profile picture. National campaign run by @GeneticAll_UK to improve the lives of those affected by rare conditions and all who support them. #RareDisease.

Rare Disease UK

@rarediseaseuk
RocheCanada's profile picture. Doing now what patients need next | Agir maintenant pour l’avenir des patients Commenting policy: https://t.co/FpU2PInzQK | Modération des commentaires: https://t.co/4qNBvVbNDs

Roche Canada

@RocheCanada
angelman's profile picture. Angelman Syndrome Foundation advances the awareness and treatment of Angelman Syndrome through education, information, research and support.

AngelmanSyndromeFdn

@angelman
RareBoneForum's profile picture. A patient-led Forum and networking arena between Patient Organisations, Scientific Societies and Industry working in rare bone diseases

European Rare Bone Forum

@RareBoneForum
txrare's profile picture. TX Rare is dedicated to improving access and health outcomes for nearly 3 million Texas #raredisease patients through education and advocacy.

Texas Rare Alliance

@txrare
ChristineWNGF's profile picture. Tweets by Christine White, President. #raredisease @NGFCanada

Christine

@ChristineWNGF
sophiesneighbor's profile picture. Boulder, CO-based nonprofit founded in response to Sophie’s diagnosis of a rare, degenerative genetic disorder: MCTO. 🗣Research/Treatment/Cure

Sophie’s Neighborhood

@sophiesneighbor
saveyourskinfdn's profile picture. National patient-led not-for-profit group dedicated to leading the fight against non-melanoma skin cancers, melanoma and ocular melanoma. Compte bilingue

Save Your Skin Foundation

@saveyourskinfdn
FundacionDravet's profile picture. A través de la investigación, luchamos por una cura del síndrome de #Dravet. @RetoDravet es nuestro equipo solidario, el más grande del mundo💜

Fundación Síndrome de Dravet

@FundacionDravet

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