Becky Masson @easyrecipesdash.com Easy, #healthy & delicious #recipes to inspire your daily #cooking! 🍜🍽️👨🍳📸
🌐 easyrecipesdash.com
#food #foodsky #foodie #diet #dinner #lunch #breakfast #drinks #wellness #fitness #lifestyle #cats #birds #gardening #nature #photography 🌿🌱🌾
@marinagiannotti.bsky.social @marinagiannotti.bsky.social 
Sasha @typeofcrayon.bsky.social 📚 Book lover | Deep thinker | Forever curious
Finding wisdom in stories and life
Dravet Syndrome Foundation @curedravet.bsky.social The mission of DSF is to raise funds for research into Dravet syndrome and related epilepsies, while offering support to patients and families. https://dravetfoundation.org
CT Rare Advocate @rarectadvocate.com Rare Disease advocate in CT. Raising Awareness and advocating for Rare Diseases patients and caregivers.
🔗 https://rarectadvocate.com - Archive and Rare Disease Resources
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
RP Impact Initiative @rpimpactinitiative.bsky.social Mobilising global awareness, partnerships and funding for research into Retinitis Pigmentosa. Together for a future without RP.
Melissa Whiter Boyer @melissawhiteboyer.bsky.social Writer. Entrepreneur. Rare disease advocate. Cancer survivor. Mom of three.
Sharing stories of grit, growth, and the messy middle of life so no one has to feel alone.
DC Health @dchealth.bsky.social DC Health, the District of Columbia's Department of Health, promotes health, wellness and equality across DC and protects the safety of residents, visitors and those doing business here. | https://linktr.ee/dchealth
@charbelm.bsky.social @charbelm.bsky.social Building a cozy corner of like-minded friends. No crypto, no financial pitches, and absolutely no creeps. RTs are just for sharing, not endorsing. ☕✨
@blurenze.bsky.social @blurenze.bsky.social I do photoshop, i mostly get free req
If u like to support me I have links attached 🔗 kofi
https://ko-fi.com/lawrencerodrigues
Big Duck @bigduckcoop.bsky.social Smart communications for nonprofits. Big Duck is a worker-owned cooperative. We’ve been building brands and campaigns, creating communications plans, and offering trainings for decades.
One Nation, Overcharged @onenationovercharged.com Fighting for lower healthcare costs & a system that works for everyone. Together. 🤝
Royal Life Saving Society UK (RLSS UK) @rlssuk.bsky.social Since 1891 we’ve been sharing our expertise in water safety, lifesaving, and lifeguarding to educate everyone to enjoy water safely. #EnjoyWaterSafely
Madeleine @helenemadeleine0.bsky.social
👨⚕️ Dedicated physician passionate about patient care and medical innovation.
📚 Lifelong learner, blending science with compassion.
💍 Happily married, proud parent of three amazing kids.
🌍 Sharing insights on health, wellness, and community.
Kevin Freiert @ksalemoaks.bsky.social A seasoned #DrugDevelopment professional with outstanding #peopleskills and a passion for serving patients and families affected by #raredisease. A broad and deep understanding of Biopharmaceutical R&D.
@ronnyvb12.bsky.social @ronnyvb12.bsky.social T1D, SJIA/ILD/Rare Disease mom/advocate, marketing professional - Boston, MA
www.sjiasupersquad.com
https://events.arthritis.org/participant/Ronny-Bachrach-2025
Kristin Johnson @ksuzj.bsky.social Digital strategist at Rad Campaign helping progressive nonprofits change the world. Passionate about new media, nature, LGBTQ+ issues, and fighting fascism. (she/her)
Genetic Epilepsy in Adults Network @gean-epilepsy.bsky.social Founded to change the way genetics is integrated into adult epilepsy care 🧬🥼 #AdultsHaveGenesToo
@persef0ni.bsky.social @persef0ni.bsky.social 
@teresatiburcio.bsky.social @teresatiburcio.bsky.social 
DebraToTheLeft @debratotheleft.bsky.social Fierce fighter for Democracy living in Minnesota
Cancer survivor and #Healthcare voter
HORRIFIED at what is happening to our country
NO DMs
#BlueCrew
Laura Packard @laurapackard.com Health policy and health justice advocate, cancer survivor & founder @healthcarevoices.org @voicesofhealthcare.org, progressive small biz owner PowerThru, host weekly streaming health care call-in show & podcast #CareTalk, she/her
Jacqueline N. Gunning, Ph.D. @jacquelinengunning.bsky.social Interpersonal & health communication, chronic illness | she/her
https://www.instagram.com/woclibrary/
Society for Participatory Medicine @participatorymed.bsky.social Collaboration is the best medicine. We envision a time when patients become full and valued partners in collaborative relationships with health professionals to achieve better health and wellbeing.
MO-KAN HASH @mokanhash.bsky.social 🟩🟩🟩🟩🟩🟩🟩🟩🟩🟩🟩🟩🟩🟩
🇺🇸🌻 LET KANSAS GROW 🌻🇨🇦
Kansas cannabis reform • Psychedelic awareness • Veterans advocacy/ activist from hell
Building community through education, art & conversation.
🔵LAWRENCE, KS DEMOCRAT🔵
Dr Louisa Selvadurai @louisaselvadurai.bsky.social Ataxia researcher and clinical neuropsychologist
Eric Salsburg…Grow The Resistance. @ericsalsburg.bsky.social 🟦Fuck trump, Fuck Fascists, Fuck Netanyahu…Save Our Democracy.
Save us, VOTE BLUE MIDTERMS/2028. LOVE YOUR NEIGHBORS!
Philly Sports Lifer. Animal Rights/Animal Welfare, Climate Change, Human/Civil Rights, Fighting For The Underdog, Standing with Ukraine 🇺🇦
Immunoglobulin National Society @ignsorg.bsky.social Dedicated to advancing #immunoglobulin therapy practice for clinicians through education, standards, and certification. Home of #Patient360: empowering patients and families with tools and support to navigate their care with confidence.
➡️ www.ig-ns.org
The North American AED Pregnancy Registry @aedregistry.bsky.social Empowering Pregnant Women with Information About Anticonvulsants through Research
Philip Palermo @palermo.bsky.social Father of a child with CLN1 Batten Disease (searching for funding for research into first-ever cures)
Freelance writer/editor/video editor. I used to make videos at TV Guide, GameSpot, Fandom, Cord Cutters News- M Matthew Pescosolido @mfpesco.bsky.social Neuroscientist | Neurological diseases | Background: Psychology → Neurogenetics/Rare disease → Neurobiology |
PhD: Brown University
@bioaccess.bsky.social @bioaccess.bsky.social 
Sondra Butterworth @sondrabutterworth.bsky.social Dr Sondra Butterworth. CEO of RareQoL [www.rareqol.com].
Community Psychologist, mixed methods researcher, EDI specialist, Educator, Mentor and Coach.
Open Research and Public Engagement Roadmap @engagedroadmap.bsky.social Co-Creating Ireland's Public Involvement in Open Research Roadmap
ENGAGED is building a national roadmap to shape public involvement in open research in Ireland. We believe that research can and does play an important role in tackling societal challenges.
Leber's Congenital Amaurosis @ei-lca.bsky.social E&ILCA's main focus is global liaising for genetically caused blindness. E&ILCA initiates and fosters vast networks of top life-science clusters and most influential groups.
@agooddayforahike.bsky.social @agooddayforahike.bsky.social Animal lover. Easily distracted by the natural world. Desperately trying to leave the world a bit better for generations to come. Kindness matters. Democracy defender. RESIST
All my photos are in the Media section📷
USC Schaeffer @schaeffer.usc.edu Home to the Schaeffer Center for Health Policy & Economics and the Schaeffer Fellows in Government Service. Transforming policy through rigorous, independent research and close engagement with public and private sector leaders.
Philippa Murray @philippajmurray.bsky.social PhD Candidate in the Stains lab at the University of Maryland Baltimore Ortho Dept. studying Connexin43 and Keratin18 🦴🔬👩🔬🐭🧬🩻🧫
Advocactelikeararemother @kerri0413.bsky.social Rare Disease, mental health advocate. Addison’s Disease, FTD, young-onset COPD. Director of nonprofit Adrenal Insufficiency United, opinion posts are mine not the organization.
American Epilepsy Society @amepilepsysoc.bsky.social Official account for American Epilepsy Society. We support research + education for professionals working towards a world without epilepsy. RPs ≠ endorsements.
CURE Epilepsy @cureepilepsy.bsky.social CURE Epilepsy is the leading nongovernmental funder of epilepsy research, with over 300 grants funded in 19 countries to date.
Joe Lindahl, MA, CAE @jlindahl.bsky.social CEO at Mission MSA. Nonprofit and association nerd. Lucky husband and father. Views and posts are my own.
LifeArc @lifearc.bsky.social Self-funded medical research organisation with one clear purpose – transforming the lives of people living with rare diseases and drug-resistant infections.
Learn more at lifearc.org
@navigatingrare.bsky.social @navigatingrare.bsky.social 
Kellyann May Navarré 🐼 🤟🏻 @kellyannnavarre.bsky.social Clinical Psych MA. TLLP. Psych+Disability Studies. Adjunct Prof. PD ABCT SIG Diversity Task Force Chair. The word you're looking for is Disabled #POTS #ASL #BPD #Fibro #BiInSci🌈 She/They
Les Turner ALS Foundation @lesturnerals.bsky.social The leader in comprehensive #ALS care in Chicagoland
Bill Brown @eyesofibad.bsky.social Elementary Math Intervention Teacher, Father of a child with Muscular Dystrophy,
Politics, Nature, Science
40:40 Recruitment - celia@4040recruitment.co.uk @4040rec.bsky.social We are a Specialist Recruitment Partner within the Pharma, Healthcare, Medical Devices & MedTech arenas throughout UK & Ireland. We cover all levels of roles in Commercial, Sales, Market Access, Market Research, Marketing, People Management & Medical
Medlive - A PlatformQ Health Brand @medliveofficial.bsky.social Education for healthcare providers, patients & caregivers. 🩺💜👩🏻⚕️👨🏽⚕️
Make informed health decisions based on the latest science.
Access Medlive here ➡️ https://bit.ly/3QAXfVt
Matt Krebs @mattokrebs.bsky.social BioCentury Inc. ( www.biocentury.com )
* Empowering Biopharma & Finance Execs | Travel Junkie & weekend warrior golfer
* Global Strategic Account Manager & Growth Team Sales Manager
RASopathies Network @rasnet.bsky.social Nonprofit research advocacy org for conditions caused by dysfunctional RAS/MAPK signaling. #rasopathies #raredisease
by Stronach in Pittsburgh
National Ataxia Foundation @ataxiafoundation.bsky.social Our mission is to accelerate the development of treatments and a cure while working to improve the lives of those living with Ataxia.
Politics Junkie (Daily Posts) @research-kills.bsky.social Daily Politics / News Updates
-Anti-fascist
-Land Back
-Lgbt+ Ally
-Human Rights
-Radical progressive 8647
Indigenous / Aztec Me-xi-ka
🇺🇸 🇲🇽
✊🏽 ✊🏽 ✊🏽
🇺🇦🇺🇦🇺🇦
🇵🇸🇵🇸🇵🇸
Fight ignorance, Share Knowledge
Join the fight for Social Democracy
❌ porn ❌ hate ❌AI
DMovies @dmovies.bsky.social your platform for thought-provoking cinema
Hawkeye8 @hawkeye8.bsky.social Do Good! Speak Up!
Take A Stand🗣️
🚫NO DMs
Election HQ @electionhq.bsky.social Democracy in action.
@michellemcclure.bsky.social @michellemcclure.bsky.social 
rareLife solutions @rarelife-solutions.bsky.social We offer a broad suite of services to improve drug development and commercialization for rare disease industry and families. As a full-service rare scientific agency, we deliver tailored, innovative solutions to meet each client’s unique needs.
Children's Hyperinsulinism Charity UK and Ireland @chcharityuk.bsky.social Supporting children and young adults with Congenital Hyperinsulinism.
Family Support Group
Patient Led Research
Advocacy
Family Days and Conferences
https://linktr.ee/chcharityuk
Elliot 🏳️⚧️ @elliotelephants.bsky.social Queer, Quaker, Art Therapist In Training, Autistic, Multiply Disabled
Patient Advocate Foundation @patient-advocates.bsky.social Patient Advocate Foundation and the PAN Foundation have merged to create the nation's most comprehensive nonprofit dedicated to helping people navigate, access, and afford healthcare. Learn more at
uniting.patientadvocate.org
Rare Disease Research UK @rdrukhub.bsky.social We hope to be able to significantly impact the RD research landscape and improve the lives of those directly or indirectly affected by rare diseases.
Anarqxista @anarqxista.bsky.social 🖤 Scientist by Day, Cosmic Cataclysm at Night.
#resist #resistrfk #nokings #fdjt #fdt #StopICE #defendscience 🧬🧬🧬 🏳️⚧️🤍🏳️⚧️🇺🇦💙🇺🇦
HonTonyCoelho @hontonycoelho.bsky.social Tony is a former U.S. Congressman from California (1978-1989). Tony is a person with epilepsy & author of Americans with Disabilities Act (ADA).
The Science Underground @scienceunderground.bsky.social Tell us your science. We'll tell the world.
Science communicators. Former federal employees. Still full-time genomics-enthusiasts.
Lipodystrophy United @lipodystrophyunite.bsky.social The ONLY lipodystrophy patient foundation in the United States. We strive to increase understanding of lipodystrophy among the patient community, medical professionals and stakeholders. Follow this account and visit our website to learn more!
@stoutheartdave.bsky.social @stoutheartdave.bsky.social 
Narcolepsy Network @narcolepsynetwork.bsky.social The official Bluesky feed for Narcolepsy Network®, a non-profit organization dedicated to advocating for people with narcolepsy and IH & their families, increasing public awareness, and promoting research.
International Pemphigus & Pemphigoid Foundation @healourskin.bsky.social The mission of the IPPF is to improve the quality of life for all people affected by pemphigus and pemphigoid through support, education, awareness, advocacy, and research. Connect with us at www.pemphigus.org
SMA Europe @sma-europe.bsky.social SMA Europe is a non-profit umbrella organisation of spinal muscular atrophy (SMA) patient organisations from across Europe. All together. One goal.
Visit our website: https://www.sma-europe.eu/
Muscular Dystrophy Pakistan @mdpakistanorg.bsky.social Our mission is to empower the muscular dystrophy community through education, advocacy, collaboration, and compassionate outreach.We actively engage with healthcare providers, researchers, policymakers, and global partners to improve the quality of Life.
TheRaCil Project @theracilproject.bsky.social A European research consortium on Therapies for Renal Ciliopathies. Co-funded by the Horizon Europe programme and UKRI - 16 partners, coordination @institutimagine.bsky.social, website https://theracil.eu/
@wilhelmfoundation.bsky.social @wilhelmfoundation.bsky.social Swedish-based international organisation leading the charge in fostering collaborations among researchers, PLWUDs and healthcare providers to find answers for individuals and families affect by undiagnosed diseases.
Liz Kennerley #LongCOVID #RareDisease @lifeaccrdingliz.bsky.social #chronicillness #patient & Federal Health Policy #Advocate @SimmonsAlumni, @remember_girls Board member @RareDiseaseDiv1 Patient RISE award recipient. My views.
Rare Disease Advisor @rarediseaseadvisor.bsky.social Trusted knowledge base of practical information and resources focused on treating and diagnosing #RareDisease.
https://www.rarediseaseadvisor.com/
@commsma.bsky.social @commsma.bsky.social 
Research Agora @researchagora.bsky.social Transforming unpublishable results into recognized scientific contributions, we help researchers make every discovery count.
Join us in building a more transparent and impactful research ecosystem!
Chris Simms @chrisnsimms.bsky.social Science journalist covering all fields. Formerly an editor at New Scientist and Nature. 🧪🐸 🍄
New Scientist: https://tinyurl.com/2tvwfa2b
Live Science: https://tinyurl.com/4mbyh7a9
Sci Am: https://tinyurl.com/bdza74ta
Nature: https://tinyurl.com/yc265esp
Jennifer J Brown @jjunebrown.bsky.social #Author, #publichealth advocate, #genetics PhD.
Creatively driven & scientifically inspired, Mom of 2 with #PKU.
Latest book: When the Baby Is Not OK: Hopes & Genes
https://jjbrownauthor.com/
@bkdawson13.bsky.social @bkdawson13.bsky.social 
PA Rare Disease Advisory Council @pardac.bsky.social