L-CMD Research Foundation
@foundationlcmd
Nonprofit raising $ to urgently research treatments/cure fatal childhood disease LMNA-related congenital muscular dystrophy lcmdresearch.org
ID: 1354498970526035977
https://linktr.ee/lcmd.foundation 27-01-2021 18:38:23
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KerriEngebrecht
@kerri0413
Advocate for adrenal insufficiency, Addison's Disease, Pediatric COPD, FTD, PNES, FND, & metal health. #igavebirtomyheroes Wife to the 1 who supports my dreams!
Christy Vacchio
@christyvacchio
Passionate Educator, Writer, Consultant, Science Nerd, Rare Disease Blogger & Advocate, Mom and CNA to 2 kids w/ DEND. My aviation nut hubby by my side.
Emily Storey
@emily__storey
Postdoctoral researcher at @UniversityLeeds | @KeeleUniversity alumna | Studying satellite cells and muscle biology 👩🏼🔬🔬
Stephanie Telesca
@sn_telesca
she/her | mama to a rare warrior 💪🏼🦄 MSH prenatal genetic counsellor #curekcnc1 @KCNC1foundation views are my own
Hannah Scott
@hannahm_scott20
Research assistant @QMUL | PhD candidate @CSI_KCL
dazzle4rare
@dazzle4rare
Est. 2016 | Signal boost RARE with #dazzle4rare every Aug | #Signalise is our #podcast | Our 🔗 linktr.ee/dazzle4rare
Juan Fafián-Labora
@fafian_juan
Ramón y Cajal Researcher #JuniorPI #extracellularvesicles #senescence #ferroptosis #Inflammaging #senodrugs #aging #cancer
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.
María López
@marialoopezgon
Iulian206
@iulian2061
Synapticure
@synapticure
Personalized virtual neurology care for neurodegenerative diseases like Alzheimer's and related Dementias, Parkinson's, ALS, and Huntington's
Julia Madsen-Østerbye
@madsenoesterbye
Postdoc in Collas lab. Interested in Chromatin organisation and gene regulation at the nuclear periphery, Laminopathies, Adipocytes. collaslab.org
hikingncarcamping
@h1k1ngcr0ch3t12
mom in Texas who loves the outdoors and sharing my adventures. UT Austin graduate. I have a son with a rare disease. I might start a car camping with kids blog.
Robin Schultz
@robinsc55879340
Cmt4b3research.org
Susanna
@susanna_gv
Commitment to healthcare issues, especially patient safety and patient collaboration. Society/climate/animals. #LMNA-Related-Dilated- #Cardiomyopathy
Jen Schiavone
@schiavone_jen
AFM Film
@afmfilmdoc
A documentary that explores when life can change in an instant. Bringing awareness to #RareDisease and Acute Flaccid Myeletis
LMNA cardiac
@lmnacardiac
LMNA cardiac - LMNA Related Cardiac Diseases Information and Network
fatos malaj
@fatosmalaj71
Abby Turnwald (she/her)
@pedsgcabby
Pediatric genetic counselor, neurogenetics, advocate for the rare disease community, let’s talk about sibling health
Yusheng Liang
@yushengliang7
Together we are stronger!
Curedlg4
@curedlg4
We are a small non-profit whose central goal is to support the research and development of treatments, therapies, and support systems for individuals with DLG4
International Meeting on Laminopathies
@imlaminopathies
Bringing together experts in #rarediseases caused by mutations in genes encoding proteins of the nuclear envelope 👩🔬 New therapies 💉 Knowledge 🔬 Patients
rareparenting
@rareparenting
Mom-created resource for parents of children with #disabilities, #rarediseases and #specialneeds
ほんりょうあいみ
@honryouaim27637
Tina
@sotomatsut35308
be Kind
Freeman
@kirinteimi96001
きりんていみずほ
@kirinteimi10139
Always positive
AnnabelleKitty
@36aj1k47w9fs4
CharityGPT
@charitygpt
⚛️ Welcome to CharityGPT - the AI tool for Nonprofits to get the most out of ChatGPT! 📝 Prompt Templates 📋 Custom Instructions 🔌 Plugins, GPTs & More
Vincent
@yang_tao17008
Sykneigh
@sykneigh49692
“Working from the heart with passion is an art!”
Sheysleaun
@sheysleaun39276
#22
Tosossi
@tosossi85258
GillGardiner
@bk3cb35ewmnajkn
VitaIsaiah
@7yanucawn9rew
Krismile
@krismile434053
Toresuesh
@toresueshgqza
SigridAusten
@a5x9ncsq5z12b
"Energy can neither be created nor destroyed and it can only be changed from one form to another."
In the Loop Houston
@intheloophtx
Bringing a weekly newsletter of great local events and insights for Houston business owners, founders, and entrepreneurs (and other fun happenings in HTX)
Sirtyff
@sirtyffgtn1bmu
Jegheigh
@jegheighaebz
In this world, everyone has their own snow, each with their own obscurity and brightness.
Nestshare
@nestsharebga5m
The real freedom is not to do whatever you want, but to not do what you don’t want to do!
Plimpirph
@plimpirpht2jng
kelly
@serndori9l
A single divorced woman looking for a long-term relationship
Shirley
@netharebpe7tnf
Teatewez
@teatewezbb_cwy
Suzy
@shoteanstm
Kabuki Syndrome Foundation
@kabukisyndrome
KSF is driving research for this rare disease through fundraising, knowledge-sharing, and collaboration. Join us to learn more and take action.
Heidi Fuller
@heidirfuller
Professor of Medical Science & Head of School Allied Health Professions & Pharmacy at Keele | collects greyhounds, cacti & succulents. Own views