Soft Bones HPP
@softboneshpp
Hypophosphatasia education and support for families and caregivers with this rare metabolic bone disease.
ID: 1664096875
http://softbones.org 12-08-2013 03:46:12
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Genentech
@genentech
Official Twitter for Genentech. See our community guidelines here: ow.ly/1sSw30lmszz
Prof Natalie A Sims
@natalieasims
bone biologist, living and working in Ngar-go, Wurundjeri Country (Fitzroy, Melbourne) Sharing information about skeletons and the bone research community.
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
PR Daily
@prdaily
Striving continuously to inspire PR, marketing and social media professionals with training, news and experiences to advance their careers.
Endocrine Society
@theendosociety
We unite, lead, and grow the global endocrine community to accelerate scientific breakthroughs and improve health worldwide. @endocrinesociety.bsky.social
Ghaisani Fadiana
@ghaisani_na
Pediatric Endocrinologist • Interest in #Diabetes #BoneHealth #CongenitalHyperinsulinism • Developing PEDIA Project to #beatNCDs #Type1Diabetes in 🇮🇩 •
CISCRP
@ciscrp
A nonprofit organization educating the public and patients about the role that clinical research plays in advancing public health.
Conquer Chiari
@conquerchiari
Mission: To improve the experiences and outcomes of Chiari patients through education, awareness, and research.
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.
Osteoporosis IOF
@iofbonehealth
International Osteoporosis Foundation is an umbrella organization dedicated to the global fight against osteoporosis. Following does not imply endorsement.
Catalent
@catalent_
From drug and biologic development services to delivery technologies to supply solutions. Catalent. More products. Better treatments. Reliably supplied.™
Vivid Seats
@vividseats
Tickets to your favorite live events 🎟️ Buy 10 tickets and get your 11th on us with Vivid Seats Rewards! DM for help. Support hours: 8a-5p CST.
Tracy Hart
@tracyoif
Advocate, friend, mom, wife...lucky. @OIFoundation CEO
Johnny Kahn
@jbird837
Associate Director of Academic Advising at University of North Georgia
ASBMR
@asbmr
ASBMR is the premier professional, scientific and medical society established to promote excellence in bone and mineral research.
Kirby Sherman
@kirbysherman
Brittle Bone Society
@brittleboneuk
Supporting people with Osteogenesis Imperfecta (OI). Providing events, CPD meetings, supporting & funding research. Tweets do not mean endorsements.
Alexion
@alexionpharma
Alexion, AstraZeneca Rare Disease was created following the 2021 acquisition of Alexion Pharmaceuticals, Inc. GL/NP/0116 GL/NP/0095
Mike Graglia 🌻
@jmgraglia
CEO @cureSYNGAP1 🧬 Pod SynGAP.Fund/10 🎧 Alum @GonzagaU @peacecorps @pdosoros @SAISHopkins @Columbia_Biz @IFC_org @bcg @gatesfoundation @newamerica
Affirm Patients
@affirmpatients
Rare Genomics
@raregenomics
RGI is a non-profit organization that provides research to families in need of diagnosis & treatment for rare genetic diseases.
PANTHERx Rare Pharmacy
@pantherxrare
PANTHERx Rare is the nation's leading rare disease pharmacy. Contact us via email at [email protected] or call us toll free at 855-726-8479.
Rare Diseases Ireland
@rarediseasesie
Equitable access to healthcare and opportunity for all! RDI - advocating for equitable access for the 300,000 people in Ireland living with rare diseases.
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.
Gerd Lärfars
@gerdlrfars
ordförande för Stockholms läns läkemedelskommitte och NT-rådet. Enhetschef för Läkemedelsstöd, Hälso- och sjukvårdsförvaltningen SLL
Kara Schweiss
@scsomaha
"The right to be heard does not automatically include the right to be taken seriously." - Hubert H. Humphrey
DNA Today: A Genetics Podcast
@dnatodaypodcast
Best Science & Medicine #Podcast Award Winner 🧬 • #GeneticCounselor @KiraDineen Interviews #Genetic Experts • #DNA #Scicomm #GeneChat
Michelle Davis
@michelledaviskc
Nonprofit professional and patient advocate, mother of two, a foodie, and constantly running late trying to fit in just one more thing
BRS
@boneresearchsoc
Bone Research Society, the oldest national scientific society in Europe devoted to bone research. Founded in 1950.
Joy Wu, MD, PhD
@joyywu
Physician-scientist @StanfordMed, loves bones. @StanfordEndo Division Chief | @StanfordDeptMed Vice Chair of Basic Science | @ASBMR Councilor
NA Advocacy
@naadvocacy
The Advocacy supports patients who have neuroacanthocytosis, an ultra-rare disease, and funds research aimed at alleviation.
Gaetano Arcidiacono
@gparcidiacono
MD | Internal Medicine | PhD Fellow | Researcher on Bone and Mineral Disorders at @UniPadova
The Lancet Diabetes & Endocrinology
@thelancetendo
Your leading source of international, cutting-edge research, review, and opinion in clinical diabetes and endocrinology. IF=44·0.
Rare Patient Voice
@rarepatientvoic
We help clients find rare & non-rare disease patients & caregivers for research studies, & connect patients & caregivers with paid research opportunities.
Frank Beier
@beierlab
This account is no longer active
Christopher Hernandez
@profcjhernandez
bsky.app/profile/profhe… linkedin.com/in/christopher…
Mariola Sánchez
@mariolaitziar85
Secretaria de AERyOH, Asociación Española de Raquitismos y Osteomalacia Heredados.
Moira Cheung
@moiracheung
Consultant in Paediatric Endocrinology and Rare Bone Conditions. @GOSH @ELCH. SDG and SDMC committees. holistic, family centred care, robust science, teaching
Angie Cunningham
@hypoangel
ECTS_Science
@ects_science
European Calcified Tissue Society @ECTS_soc Science account maintained by the social media action group of researchers. #ECTS2025
RNOH Centre for Metabolic Bone Disease
@rnohmbdcentre
Our vision is to provide High Quality Care for people with Bone Diseases.
IFMRS
@ifmrsglobal
We aim to advance MSK research globally in order to prevent and treat MSK diseases through sharing resources, raising public awareness, and providing education.
Medlive
@medliveofficial
Education that empowers. 💻📲 A PlatformQ Health learning channel 👋🏼 Join our community of patients, caregivers, & advocates
Be Biopharma
@bebiopharma
Pfizer Medical
@pfizermed
Pfizer sponsored. Posts are intended for US healthcare professionals (HCPs) only and may not be suitable outside the US. pfi.sr/qr5
Laia Gifre
@laiagifre1
Rheumatologist, MD PhD - bone metabolic diseases - Hospital Universitari Germans Trias i Pujol, Badalona - UAB Associate Professor
Arie Zakaryan, PhD
@drariezphd
Pediatric pain psychologist at Phoenix Children’s Hospital @phxchildrens , he/his/him (opinions expressed here are my own; RTs do not equal endorsement)
Haystack Project
@haystackproject
We are committed to the Ultra Rare Disease Community. Bringing together all stakeholders to educate & advocate for reimbursement policies.
Emma Richter
@emmatrichter05
The Assistance Fund (TAF) Advocacy
@tafadvocacy
Advocating for public policies that ensure access to clinical care, diagnostic testing, therapy, and treatment at a cost within reach.
Julie Creswell
@julie_creswell
Covering the food biz for the NYT. Mom to a smart goldendoodle and two hockey goalies. Speaks fluent Iowan. Send tips to [email protected]
Far fetched living
@heynonni
SynGAP Research Fund (SRF)
@curesyngap1
#SYNGAP1 🧬 = 🧠NDD DEE causing #Epilepsy #Autism #ID #Sleep #GI. Incidence = 6️⃣.1️⃣/💯k ICD10 syngap.fund/F78A1 syngap.fund/10 🎙
CASA HUNTER
@casahunterbr
em
@ghost__legs
a chronically ill tap dancing pile of trash 🌺
E. Blair Clark-Schoeb
@ebcs22
Executive communications strategist, mother of four, dog lover and committed to sustainable fashion. Opinions are my own.
Pipettologist
@bb_leakers
Antique pipette collector and enthusiast
Aruvant Sciences
@aruvantsciences
Bringing hope to patients living with rare diseases by developing life changing and potentially curative gene therapies, with a near-term focus on SCD.
Black Cat
@minrberts
Cari
@carid1983
Wife and mom of 4 grandma of 1 precious granddaughter. My passion is Advocacy and I am fortunate enough to be able to do this for my job.
Jakob Höppner
@jakobhoeppner
M.D. | Research-Fellow @MGHBoneResearch @Harvardmed | Working on #PTH1R #Calcium #Phosphate
European Reference Network on Rare Bone Diseases
@ern_bond
Share. Care. Cure.
Jan Walker
@janwalk29193011
I love Disney movies, Harry Potter books and Movies, Science-Fiction and Family ❤️🇨🇦
Wendy Erler
@wendy_erler
Passionate about patient advocacy @AlexionPharma and those who are rare. Tweets/RTs are mine only.
Inozyme Pharma
@inozyme
We are a pioneering, clinical-stage biopharma company dedicated to developing therapeutics for rare diseases that affect bone health and blood vessel function.
davensharontalk
@davensharontalk
davensharontalk is about our life, family,Hypophosphatasia (HPP), helphopelive.org/campaign/12330 Spirituality, and enjoying the journey along the way!