United Mitochondrial Disease Foundation @UMDF
UMDF powers the research, education, & support that is advancing treatments for patients and families affected by mitochondrial disorders. umdf.org Pittsburgh, PA Joined April 2009-
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NEW Episode of UMDF's Powerhouse Podcast is now available! Join UMDF's Brian Harman and Dr. Philip Yeske in a talk with guests, Todd Lacey from the UMDF Board of Trustees and Dan DiPietro, Co-Founder of Pierrepont Therapeutics. Watch the video podcast: youtu.be/ZBVNoIvEuJo
TAKE ACTION TODAY! Ensure the continued FEDERAL FUNDING of mitochondrial disease research. Contact your congressional leaders TODAY at umdf.org/advocacy
May 3 DEADLINE APPROACHING! We’re proud to partner with the Child Neurology Foundation to conduct a survey to understand caregivers’ experiences on their journey in child neurology. Complete the brief survey: surveymonkey.com/r/UMDF-24
10-year-old Vera loves the outdoors. But, when Vera is low on energy she sometimes rides in a stroller. This is life for the thousands of patients living with #mitochondrialdisease. Help us go the distance and fund research for #mito treatments. Give Hope umdf.org/24hope
We're pleased to welcome @BaylorGenetics as a #MitoMed 2024 Conference Silver Sponsor! Thank you for your dedication to the mito community. Learn more about becoming a conference sponsor at umdfconference.org
Don't forget! Dr. Hirano and Dr. Scaglia will be featured in our April Ask the Mito Doc webcast: MELAS 101. Plan to join us Tuesday, April 30 @ 7:00 pm eastern. Register here for ZOOM credentials: bit.ly/AMDApril2024
Join the mitoSHARE patient registry NOW and be ready for the #MitoMed 2024 Clinical Research Pavilion sign-ups COMING SOON! Join today at umdf.org/mitoshare
Register Today for #MitoMed 2024: umdfconference.org
We’re proud to partner with the @Child_Neurology FDN to conduct a survey to understand caregivers’ experiences with child neurology. Results will be shared with advocates and health care providers. Caregivers, please complete this brief survey by May 3rd: surveymonkey.com/r/UMDF-24
Exciting discussions planned for #MitoMed 2024 in Cleveland! Have you registered? Booked your room at the conference hotel? Visit umdfconference.org for more info.
Join us on Tuesday, April 30 at 7:00pm eastern for an Ask the Mito Doc webcast on MELAS 101, featuring speakers Dr. Michio Hirano and Dr. Fernando Scaglia. Register and Submit your Questions in Advance here: bit.ly/AMDApril2024
Your Gift of Hope supports patients and families across the country. Families looking for connections, looking for answers, looking for hope. Families like the Johnsons and patients like Vera, impacted by #mitochondrialdisease. This spring, Give Hope: umdf.org/24hope
Thank you, @AkronChildrens, for returning as a #MitoMed Conference sponsor! We appreciate your continued, long-time support of the mito community! Learn more about becoming a conference sponsor for MitoMed at umdfconference.org
On Volunteer Recognition Day, we celebrate ALL of the volunteers who make UMDF events, support, education, advocacy, and funding for research possible. Thank you all! #Volunteers make ALL the difference! Learn more at umdf.org/get-involved
Meet Vera. Like any other 10-year-old, she loves skiing in the winter, biking in the spring, and playing on the beach in the summer. But, Vera lives with mitochondrial disease. This spring, give the Gift of Hope -- for Vera and so many others with #mito: umdf.org/24hope
Did you know? You can turn almost ANYTHING into a Do-It-Yourself Fundraiser that brings the #mito community closer to cures. Get started today: umdf.org/diyfundraising
UMDF's Margaret Moore and UMDF Support Ambassador Jenny Hobbs have been exhibiting at the Annual Meeting of the Society for Inherited Metabolic Disorders in Charlotte this week. If you haven't stopped by -- you can find them at Booth #111! @SIMDtweets
Check out one of our annual programming favorites at #MitoMed 2024 -- the Coffee and Conversations networking session! Here are the topics and groups you can expect to be available for connection, resources, and support. Join us at umdfconference.org
The #MitoMed 2024 #LHON Conference allows patients and families to connect with others within the LHON (Leber Hereditary Optic Neuropathy) community. Learn more about this year's LHON program at umdfconference.org/LHON
Come find us at the Society for Inherited Metabolic Disorders Annual Meeting in Charlotte, April 14-16. Let's talk research funding, clinician resources, and patient services! UMDF's Margaret Moore will see you at Booth #111. @SIMDtweets
FrezzaLab @FrezzaLab
25K Followers 3K Following We are a group of metabolism-lovers, focused on mitochondrial metabolism. Tweets are from Christian. https://t.co/EbWsJo6DnZ
Martin Picard @MitoPsychoBio
10K Followers 754 Following Mitochondrial Psychobiology. Our team studies energy, mind-body communication, mitochondrial diseases, aging, and the science of health.
Minczuk Lab @mito_gene
3K Followers 949 Following Mitochondrial Genetics Group @MRC_MBU @Cambridge_Uni led by Michal Minczuk
Mitochondrial Medicin.. @Mito_Therapy
6K Followers 1K Following Dario Brunetti PhD | mitochondrial dysfunction in genetic disease and aging | stem cell | small&large animal models | In Utero Fetal Gene Therapy
Mito Research @MitoResearch
6K Followers 1K Following The latest news from the Wellcome Centre for Mitochondrial Research at Newcastle University. https://t.co/uadf04HQrn…
The Lily Foundation @4Lilyfoundation
4K Followers 2K Following The UK's leading charity fighting mitochondrial disease.We work to support patients & families,raise awareness & fund pioneering research towards finding a cure
Natalie Niemi @nieminm
4K Followers 3K Following Assistant professor @WUSTLmed @WUSM_BMB Biochemistry & Molecular Biophysics. Mitochondria, metabolism & cell signaling. Mom of 2. Advocate for women in science.
mitojobs @mitojobs
2K Followers 825 Following Searching for mitojobs in the Twitterverse for you🧑🏼🔬 Tag @mitojobs and I will RT! Run by Hien, alumni from @AlexTrifunovic lab
Brendan Battersby @Solocanuck
366 Followers 475 Following Biologist @helsinkiuni captivated by the beauty of life; lover of food, art, music, nature and breaking bread with fascinating people
Anu Suomalainen Warti.. @AWartiovaara
3K Followers 781 Following Mitoambassador; wide interest in science. Tweets in English and Finnish. Publishes as A Suomalainen. Academy Professor, University of Helsinki.
Vamsi Mootha @VamsiMootha
5K Followers 263 Following Professor @HarvardMed @MGH_RI @BroadInstitute @HHMINEWS interested in mitochondria, oxygen, bioenergetics. Tweets = my own.
MitoCanada @MitoCanada
2K Followers 248 Following Offering hope to those living with – or at risk of developing – mitochondrial disease through support, education, awareness and research. 💚 #MitoCanada
Nuno Raimundo @nunoraimundo
2K Followers 636 Following scientist #mitochondria #lysosomes #organelle #crosstalk #metabolism #rarediseases #inbornerrosofmetabolism #Benfica
Aurora Gomez-Duran @A.. @auroradevea
2K Followers 3K Following mtDNA geek Mito-Nuclear Crosstalk. mtDNA variants. MitoPhenomics Lab @cimususc & @CIB_CSIC. #mitoWomen and #WomeninScience. [email protected]
The Journal of Inheri.. @JIMD_Editors
3K Followers 877 Following The JIMD is the official journal of the Society for the Study of Inborn Errors of Metabolism (SSIEM). Podcasts at https://t.co/QZggmJr9Of
Ruben QC @RubenQC_Lab
2K Followers 579 Following Interested in dynamics in life and biomedicine, with a focus on mitochondria
Stewart Lab, Mitophil.. @JMitophile
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Mito Foundation @AusMito
889 Followers 241 Following The Mito Foundation wants to raise awareness and ultimately find a cure for this debilitating and potentially fatal disease.
Division of Molecular.. @MolMet_KI
2K Followers 205 Following Mitochondrial genetics research. Groups of Professor Nils-Göran Larsson, Dr Anna Wredenberg, Dr Joanna Rorbach and Dr Roberta Filograna - Karolinska Institutet.
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Anna @avkotrys
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Oksana P @OksanaP44748236
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Mer @pharmamer
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Oyuka Byambasuren @OyukaMDPhD
921 Followers 1K Following 🇲🇳MD, 🇦🇺MMedRes, PhD, Postdoc @Institute4EBH @BondUniversity. #mHealth, #healthapps, #EBP, #nondruginterventions, #LongCovid. 💙#Space
Billy Hanlon @bhanlon15
12K Followers 11K Following Director of Advocacy & Outreach, Minnesota ME/CFS Alliance | Long COVID Ally
OMFCharityMugs @BFWoodburn
10 Followers 170 Following Severe ME/CFS patient since 2006, fundraising for the Open Medicine Foundation, all proceeds from all sales go directly to OMF, Worldwide shipping🩵
Jack Zhang Lab @zhang_lab
1K Followers 732 Following Jack (Kai) Zhang Lab at Yale University Intracellular Transport, Cell Motility, Mitochondria, Cryo-EM/ET Methodology -- Cellular Structures, Life & Health
Ngan Tran @TranMitoWizard
11 Followers 106 Following Doctoral Student @MayoGradSchool Clinical and Translational Mitochondrial Researcher. Tweets=mine
Avraham Avinu אבר�.. @Manuel_Amador_1
632 Followers 5K Following
Amiable @J07P86e4053WySy
22 Followers 1K Following I am a lively and cheerful girl who would like to meet a good friend.
Gregg VeneKlasen DVM @GreggDvm
2K Followers 3K Following Veterinary Medicine, Bucking Horses, Cloning, WTAMU, Gus(Przewalski), Microbiome, Palo Duro Canyon,Genetics! “barba non facit philosophum”
Sampurna Biswas @SampurnaBi12910
1 Followers 187 Following
Gloria V. Echeverria,.. @DrGEcheverria
973 Followers 894 Following Assistant Professor investigating mitochondrial and metabolic evolution of breast cancer. Tweets are my own.
soylatte @soylatte1111
1 Followers 10 Following
Anupam Patgiri, PhD @apatgir
493 Followers 763 Following Assistant Professor @EmoryMedicine focusing on #mitochondria #metabolism and #chemicalbiology |PhD @aroralabnyu, Postdoc @VamsiMootha | Photographer | 🇮🇳🇺🇸
CJara @cjarao1
14 Followers 134 Following
Selvaraj Ayyamperumal @ssselva3
15 Followers 250 Following Postdoctoral Researcher/Research Scientist
TheMomentSheSnapped @Maureen1743
574 Followers 1K Following Photo Hobbyist.📷 Behavioral Health, Parent advocate, Survivor. ✌🏻NEPA
Ellacat @LIASO7
50 Followers 515 Following https://t.co/HdWqoZTpsJ Black Swan Not a crafty packager Retweets & "likes" do not necessarily imply endorsement Living in the upside-down Fund libraries Vote!
Gabe @grider0041
20 Followers 27 Following
Taylor Lab @taylorlabncl
119 Followers 249 Following Investigating molecular mechanisms associated with mitochondrial disease and disorders of autophagy @mitoresearch @NewcastleUni @NewcastleHosps @NEYgenomics
Heather Gatcombe @HGraceGatcombe
2 Followers 10 Following Mom of 3, Mito & Heart Transplant Mom, and Practicing Radiation Oncologist at Emory focusing on Breast Cancer Care for patients in the Atlanta and Decatur Area.
BodyandMind_Clinic @BodyandMind_C
26 Followers 83 Following Heath and wellbeing https://t.co/rlOK5nWkT7 📷 https://t.co/mOxKBMB0mW 🎦 https://t.co/BFDX3pYkrE
KeelySchellenberg! @MyNerdling
6 Followers 92 Following
Armand Vorster @VorsterArmand
13 Followers 113 Following
OAT @OliviaTataraArt
207 Followers 251 Following ♈Muse Creating Energy Art ⚡Books & Poetry ⚡Health for Your Spirit and Soul ⚡ Inspiration & Creativity View all Art Forms 🪄 #OliviaTatara 💹
Alice Roosevelt @Brandnewday223
469 Followers 2K Following
Maureen Cullen @MauC39767
232 Followers 2K Following
MRSzymanski_Lab @MRSzymanskiLab
270 Followers 440 Following Structural Biology Lab at @Uniwersytet_GD working on understanding the function of macromolecular machines involved in DNA replication and repair processes
Esmaa @EBouhamida
221 Followers 2K Following Postdoctoral researcher🫀🧫 PhD. Molecular Medicine & Pharmacology 🔬 #Cardiology
Ana K @ana_kitanovic_
72 Followers 564 Following Master student in interdisciplinary sciences at ETH Zurich 🧬 @eth_en passionate about mitochondria biology 🔬🧫
AstoundResearch @AstoundResearch
249 Followers 1K Following Fund your lab. Personalized recommendations for hundreds of funding opportunities to make your life easier.
Canadian Rare Disease.. @CanadianRDN
226 Followers 592 Following Pan-Canadian network uniting clinical, scientific and patient experts to improve the health and well-being of individuals affected by rare diseases.
Megan McGuire @meganelizmc
83 Followers 413 Following University of Cincinnati Undergraduate in Chemistry | Aging Research | views my own
The Mighty Mitochondr.. @TheMighty_Mito
15 Followers 20 Following °☆°🧬The Organelle. The Myth. The Powerhouse.🧪 °★°
Laur @LaurNicolae70
158 Followers 2K Following
Oxford-Harrington Rar.. @OHRareDisease
1K Followers 1K Following Rare Disease Centre @UniofOxford in partnership with @HarringtonDI_UH @UHhospitals, accelerating cures for rare diseases
Rebecca Ratcliffe @rebeccarat
6K Followers 3K Following Southeast Asia correspondent for @guardian https://t.co/xUcmXgNWtX
Minczuk Lab @mito_gene
3K Followers 949 Following Mitochondrial Genetics Group @MRC_MBU @Cambridge_Uni led by Michal Minczuk
Mito Research @MitoResearch
6K Followers 1K Following The latest news from the Wellcome Centre for Mitochondrial Research at Newcastle University. https://t.co/uadf04HQrn…
The Lily Foundation @4Lilyfoundation
4K Followers 2K Following The UK's leading charity fighting mitochondrial disease.We work to support patients & families,raise awareness & fund pioneering research towards finding a cure
MitoCanada @MitoCanada
2K Followers 248 Following Offering hope to those living with – or at risk of developing – mitochondrial disease through support, education, awareness and research. 💚 #MitoCanada
Mito Foundation @AusMito
889 Followers 241 Following The Mito Foundation wants to raise awareness and ultimately find a cure for this debilitating and potentially fatal disease.
Devin Shuman (she/her.. @DevinShuman
3K Followers 5K Following A genetic counselor with #MitochondrialDisease. @SmithCollege Alum, #mitoGC #disabledGC #GeneChat #AbortionIsHealthcare #RareDisease opinions are my own🏳️🌈
MitoAction @MitoAction
3K Followers 504 Following MitoAction is a 501(c)3 charity, tax id 55-0899427, that provides support, advocacy & educational resources FREE for all those affected by mitochondrial disease
Liz Kennerley (she/he.. @LifeAccrdingLiz
1K Followers 2K Following #chronicillness #patient and Federal Health Policy #Advocate @SimmonsAlumni, @remember_girls Board member. Views my own.
Therapeutic Advances .. @TARareDisease
633 Followers 1K Following A SAGE gold open access journal | Publishing high-quality articles in the field of rare disease | Launched in 2020 | Editor @Urvalind | #TARareDisease
Samantha Lewis @SamLewisPhD
3K Followers 2K Following Assistant Professor @berkeleyMCB, mtDNA obsessed, mother to the Lord of Chaos, she/her, tweets my own
Conor Ronayne @RonayneConor
41 Followers 98 Following
Maria Fajt @MariaFajt
226 Followers 66 Following Principal @ O’Block Elementary with Plum Borough School District
Fran Sciullo, D.Ed. @HPEPBSD
449 Followers 88 Following Welcome to the Holiday Park Intermediate School Twitter page. See updates with our students and learning community. 😀 Work Hard, Dream Big at HP!
Biolog @BiologInc
156 Followers 19 Following Biolog has the tools, services, and support to provide the microbial phenotypic characterization and ID for functionally relevant insights.
neuro vive @NeuroVive
22 Followers 2 Following
GeneDx @GeneDx
7K Followers 840 Following GeneDx is paving the way for faster diagnoses and more precise care plans through genomic and clinical insights.
GenSight Biologics @GenSightBio
2K Followers 104 Following A clinical-stage biotechnology company developing novel therapies for mitochondrial and neurodegenerative diseases of the eye and central nervous system.
Revvity @RevvityInc
46K Followers 1K Following Expanding the boundaries of human potential through science. Learn more at https://t.co/AnPOPIWgsv
Santhera @Santhera
791 Followers 233 Following #Santhera is passionate about improving the lives of patients suffering from a rare disease. #Duchenne #DMD #neuromuscular #theirfutureourfocus #raredisease
Akron Children's @AkronChildrens
15K Followers 4K Following Parenting & child health info via videos, patient stories, news & more. Follow does not equal endorsement
Delta Gamma Fraternit.. @deltagamma
21K Followers 2K Following Official account of #DeltaGamma, a women’s fraternity. We exist to empower women and exemplify what it means to be a Do Good Sisterhood. Foundation: @DGF_Tweets
Tishcon Corp @tishconcorpmd
8 Followers 0 Following Tishcon is a manufacturer and wholesale distributor of vitamins and supplements. We only work with contract customers. Please check us out on our web site.
RDLA @RareAdvocates
6K Followers 3K Following A program of the EveryLife Foundation committed to growing the patient advocacy community and working collaboratively, thereby amplifying the patient voice!
BioNexusKC @BioNexusKC
2K Followers 1K Following BioNexus KC inspires thinkers from different disciplines to combine their efforts for a common purpose – healthcare innovation.
StealthBT @StealthBT
1K Followers 127 Following We’re driven by a desire to help those with mitochondrial dysfunction, leading mitochondrial medicine for both rare and common diseases. https://t.co/45rgM9EXLN
UPMC @UPMC
24K Followers 394 Following Headquartered in Pittsburgh, UPMC is a global health care leader. We operate 40 hospitals and 800 doctors’ offices and outpatient sites in PA, MD, and NY.
Mito Mom @buffy2506
509 Followers 773 Following I am an advocate for the United Mitochondrial Disease find a cure for my daughter Baylee and proud momma to Ohio Univ graduate Jade
Sebastien @french_sebo
949 Followers 3K Following i m the dad to a young child with Leigh disease, a mitochondrial disease and medical cannabis advocate/educator. FHF Board Member, Co-Founder Georgia's Hope
WMDW @MitoAware
597 Followers 104 Following World Mitochondrial Disease Week raises awareness of mitochondrial disease on a global scale through educational, fundraising and advocacy activities.
Debbie @momx3deb
2K Followers 2K Following autism/mito mom. baseball mom. photojournalism mom (is that a thing?). cat mom. cautious optimist. avid reader. movie fan. caffeine seeker. volunteer.
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.
Laurel Smith @DirtDogsMom
461 Followers 1K Following A lifelong Phillie’s fan whose heart was stolen by the Tampa Bay Rays and Minnesota Twins! Mom of an amazing young man and champion for Mitochondrial Disease. ⚾
Sharon Goldin @SharonGoldin
723 Followers 2K Following Legally blonde widow & mom of 3 boys #learningtoliveagain Tweets about #TV #dreams #mito #burningman #music #healthy and #generalBS
Mito Girl @LIVINwithMITO
362 Followers 1K Following I'm living with mitochondrial disease, dysautonomia and Ehlers-Danlos syndrome
Faye @LeighNetwork @LeighNetwork
427 Followers 376 Following Leigh Network brings together families affected by mitochondrial illnesses at meetings, fundraisers and events! We also support research into Mito Disease.
SuperChargedforMito @scfMITO
925 Followers 2K Following Jennifer (Perry) Haught is Single mom of Big Zach! Super Charged For Mito Is making a difference in the lives of kids with mitochondrial disease and Autism.
Mito Quilts of Hope @Quilts_of_Hope
373 Followers 851 Following Mito Quilts of Hope's goal is to raise public awareness of Mitochondrial Diseases by educating quilters who make and donate quilts to people with Mito.
Jamieson Smith @JamiesDirtDogs
173 Followers 708 Following Proud SJU Hawk! I love good baseball, music, photography & finding a cure of Mitochondrial Disease! Be the change you want to see in the world! ✌💒
MM+M Magazine @MMMnews
12K Followers 1K Following MM+M: the most objective, relevant, and timely source of news, analysis, and trends in pharmaceutical and healthcare marketing
Astellas Global Healt.. @AstellasFDN
715 Followers 216 Following Awarding grants to improve access to health, build healthier communities and provide disaster support for underserved global populations in need.
Astellas Pharma US @AstellasUS
52K Followers 1K Following A pharma company dedicated to changing tomorrow by improving the health of people around the world. Tweets for U.S. audience. Guidelines: https://t.co/AJlgiDgWSG
Craig Porter @bioblastgeek
1K Followers 715 Following Isla and Charlotte’s dad. Physiologist and mitochondria enthusiast living in Little Rock. All views are my own.
New Jersey Devils @NJDevils
789K Followers 2K Following 3X Stanley Cup champs and the dynasty that haters love to hate. You’re now trapped here. Presented by @citizensbank.
Anne Melchior @MinnesotaRed
122 Followers 498 Following
Lissa Poincenot @LHONpoince
195 Followers 115 Following Leber's Hereditary Optic Neuropathy (LHON) is a rare genetic disorder that causes sudden blindness. Raising awareness, connecting families, & raising funds.
Christy Koury @christykoury
599 Followers 1K Following Artist & activist, INFJ, interested in mitochondrial disease, autism, social equality, civil rights, arts, philanthropy, linguistics, and genuine human kindness
Rachael Pipp @RachaelPipp
91 Followers 75 Following hi i'm 36 years old, I have a mitochondrial disease, I like to hang out with friends and have a good time!
Steve Grossman @stevenjgrossman
2K Followers 4K Following Interests #AAV, #RareDisease, @ADCY5 , DOCK3, movement disorders, drug discovery https://t.co/bUjHXNnoa7. #ViralVector Business Development Views expressed are my own
Keli Stone @KeliStone1
255 Followers 841 Following Wife, mother, Grammy, business owner. Love watching my boys do what they love.
Terry Roberts @Ms_TerryLee
147 Followers 518 Following I am a school psychologist, with training in clinical psychology and neuropsychology. My personal quest is to provide information about mitochondrial diseases.
Is your nonprofit or company joining us at NORD's 2024 #LivingRareForum in #LosAngeles this June? Register by Tuesday, April 30, to take advantage of early bird pricing for this #RareDisease patient and family event: livingrare.org Patients and caregivers RSVP for free.
We're thrilled to announce the 2024 NORD #RareImpactAwards Honorees! These stars have each made incredible advancements on behalf of the #RareDisease community, and we look forward to celebrating them this June in Los Angeles! Meet the Honorees: rareimpact.org
Calling the mitochondrial disease community! Join clinicians, researchers, and families at #MitoMed2024, the @UMDF's Mitochondrial Medicine Conference 2024 in Cleveland, Ohio this June 26-29! Register at umdfconference.org
Looking forward to seeing @UMDF in Charlotte at #SIMD2024!
Come find us at the Society for Inherited Metabolic Disorders Annual Meeting in Charlotte, April 14-16. Let's talk research funding, clinician resources, and patient services! UMDF's Margaret Moore will see you at Booth #111. @SIMDtweets
The very last presentation at #SIMD2024 with more to come for GMDI: a moving panel on the importance of patient advocacy in IEM life. Thank you for all you do for each other and for us.
We are excited to be attending the New England Ophthalmological Society (@NEOS_Eyes) as well as the Envision 2024 New York State Ophthalmological Society meeting today! Stop by our exhibit table to learn about our upcoming global Phase 3 clinical trials in #dryAMD!
Busy start to #MitoMed24 for Head of Research, Alison Maguire & Research Manager @ABioBlog Such a great opportunity to connect with others working the field of #mitochondrialdisease Marnie Falk @ChildrensPhila Phil Yeske @UMDF Sean Murray @AusMito Luca Bolliger @PolGFoundation
@UMDF @ChildrensPhila Amy is AMAZING!! ONE OF THE BEST SOCS ON THE PLANET!!
Today is #BarthSyndromeAwareness Day! Barth syndrome is a serious, progressive heart disease that affects ~300 people worldwide. We’re honored to work with this resilient community to advance understanding and care. #RareDisease barthsyndrome.org/advocacy/barth…
Many thanks to mito warrior Danielle for giving an insight into her diagnostic journey. In this short film Danielle talks about her experience and about why getting a genetic diagnosis is important for patients with #mitochondrialdisease
#WorldOrphanUSA Keynote Panel: "Unlocking Access: Transformative Policies and Strategies for Orphan Drug Accessibility", with: Health Policy Strategies, LLC @EveryLifeOrg @JNJNews Friedreich's Ataxia Research Alliance (FARA) Register & save here: tinyurl.com/ytf27dud
@GillianHSapia @HouseCommerce @EnergyCommerce @HouseDemocrats @HouseGOP @WaysandMeansGOP @WaysMeansCmte, had a #healthcare markup this morning, when will Energy and Commerce do the same with the ORPHAN Act? (@IAmBiotech @TeamCMR @RareAdvocates) 🔬🦓💊💉
@GillianHSapia @HouseCommerce @EnergyCommerce @HouseDemocrats @HouseGOP, PLEASE markup ORPHAN Act next week.#Innovation
Your incredible support for Rare dazzled us! 🌟 Through our Global Chain of Lights, you illuminated awareness about rare diseases, lighting up the world. Stay tuned for a video featuring highlights from the #LightUpForRare campaign! Together, we make a difference! #RareDiseaseDay
Keep hydrated on the go and raise awareness of The #LilyFoundation with our fab new Lily water bottles. These 500ml screw top bottles are made from metal to help keep the contents cool. £15 from our online shop: ow.ly/IQqU50Qp6mJ #water #mito #hydrate #merch
Why raise awareness? Shedding light on rare diseases is vital. Limited healthcare knowledge leads to delayed diagnoses, while expensive treatments pose financial burdens. Advocacy can drive better resources, research, and quality of life. 💙 #RareDiseaseDay #ShareYourColours
Be a part of the awareness journey for Mitochondrial disease with @AusMito Engage with our fact today and delve deeper into their work: mito.org.au . #rarediseaseDay2024 #LightUpForRare #ShareYourColours #rarediseaseDay #geneticallianceaustralia #raredisease
You still have a day to vote for @UMDF!
WATCH and vote for THE POWERHOUSE WORKOUT to benefit UMDF! Vote, share, and spread mito awareness: projectforawesome.com/watch?v=H-VYW8…… #p4a2024
Thanks to our amazing supporters The #LilyFoundation has raised a whopping £9.8 million!! We're so grateful to each & every one who has helped make this happen. Community fundraisers, corporate fundraisers & our amazing celebrity supporters & friends. Fighting #mito Finding #hope
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