We are excited to present the Annual COMBINEDBrain In-Person Meeting!! Sept 28, Kansas City, MO. Please come!!! We want this to be one of those good kinds of meetings: memorable, a working meeting - lots of discussion ending in action, coffee all day long, cocktails starting BEFORE the end of the meeting (our trademark manoeuvre). And...Kansas City Bar-B-Que (burnt ends, brisket and ribs) if enough of you stay for dinner. This meeting is being held in cooperation with Global Genes, and we encourage you to register for both conferences. Date: September 28, 2024, 8am-7pm CST Location: Kansas City Marriott Country Club Plaza, 4445 Main St, Kansas City, MO 64111 Objective: Bring all COMBINEDBrain stakeholders together in one room to fast-track collaboration on translational research for rare genetic neurodevelopmental disorders. The link to register is https://lnkd.in/e7YvxJvg For more info and to see the "almost final draft" agenda, write to [email protected]. And let us know if you are staying for dinner. The Global Genes Week in RARE/RARE Advocacy Summit takes place down the street from September 25-28, 2024 at Loew's Hotel, 1515 Wyandotte St., Kansas City, MO, 64108.
COMBINEDBrain
Research Services
Nashville, Tennessee 958 followers
Organizations collaborating to fast-track cures for rare genetic neurodevelopmental disorders.
About us
COMBINEDBrain is a consortium that exists to collect research and data from drug developers, foundations and patient care representatives around severe brain disorders with the goal of fast tracking clinical trials.
- Website
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http://www.combinedbrain.org
External link for COMBINEDBrain
- Industry
- Research Services
- Company size
- 2-10 employees
- Headquarters
- Nashville, Tennessee
- Type
- Nonprofit
- Founded
- 2019
- Specialties
- neuroscience, research, and clinical trials
Locations
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Primary
Get directions
Nashville, Tennessee 37204, US
Employees at COMBINEDBrain
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J. Michael Graglia
SYNGAP1 | Rare Disease Advocate | Founder & CEO @cureSYNGAP1
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Amber N. Freed
Curing Rare Diseases
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Jason Curry
Growth Leader | The SCN2A Foundation
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Emma James
Global Clinical, Medical and Patient Affairs; Member, Pediatric Gene Therapy Medical Ethics Working Group (PGTME)
Updates
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Today, Nature Magazine published a profile on our CEO, Terry Jo Bichell by Elizabeth Landau. The rare disease field is filled with amazing parents who get bad news and quickly pivot to help the world. Our governing board and member leaders are among those with similar inspiring stories: Amber N. Freed, Nuala Summerfield, Sunitha Malepati, Keith McArthur, Bina Maniar, Geraldine Bliss, J. Michael Graglia, Jeff D'Angelo, Sarah Glass, PhD, Justin West, MD, Kimberly Lodato Nye, Jennifer Sills, Charlene Son Rigby, Rachel Heilmann, to name a few.
How a midwife became a neuroscientist to seek a cure for her son
nature.com
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Rare Disease Day! There is so much progress to celebrate! And so much work to be done - in labs, in clinics, in congress, in factories, in pharmacies, in homes, by doctors, scientists, businesspeople, donors and moms. Lots and lots of moms. Here's recognizing all the moms out there (and a few dads) who have fought to find cures for rare diseases, step by step, zebra by zebra.
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This is amazing!!!
Senior Program Manager, Science in Society and Lead, Rare As One Network at the Chan Zuckerberg Initiative
Attention all attorneys!!! As a #RareDisease advocate and #lawyer, I know first-hand the legal challenges that patient-led rare disease organizations can face as they work to drive forward research towards treatments and cures for their communities. And I also know that there is no more inspiring community of people than the rare disease community. Their grit, determination, and commitment to helping others even when facing tremendous challenge themselves, is unparalleled and deeply inspiring. Today, on Rare Disease Day, #WeTheAction, in partnership with the Chan Zuckerberg Initiative's #RareAsOne Project, launched a pro bono legal support program to support patient-led organizations in the Rare As One Network. I guarantee, without a doubt, your life will be changed for the better in supporting this life-changing work. These organizations, working to move research forward and save lives, need your help. Sign up for one of the listed pro bono projects today! https://lnkd.in/gYF4desA Anna Chu #RareAsOne #raredisease #research #patients #probono #legalsupport
We The Action - Rare As One Network
wetheaction.org
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It is Rare Disease Week but I am not participating in DC because Louie Bichell and I are “living the dream”, getting his disease-altering clinical trial treatment…here’s to all the movers and shakers who are making things better for people with rare diseases. Angelman Syndrome Foundation. Foundation for Angelman Syndrome Therapeutics COMBINEDBrain EveryLife Foundation for Rare Diseases National Organization for Rare Disorders, Inc. (NORD) Global Genes Every Cure n-Lorem Foundation.
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Once Upon a Gene features COMBINEDBrain in the latest podcast!
🧬 Host of Once Upon A Gene Podcast 👨👩👧👦 Empowering families navigating rare diseases 🌍 Building a supportive community 🔍 Advocacy | Support | Education 🌟 Subscribe & follow for hope, help & connection
I am always getting questions from families and one of them is; "What is COMBINEDbrain?" "Should we join CB?" "Who qualifies?" "How is it different from what we are already doing?" The brilliant and totally chill Terry Jo Bichell explains it all here in this detailed episode. Episode Highlights🧠 Terry's transition from a nurse and midwife to a leader in molecular neuroscience. The birth of COMBINEDBrain, aimed at accelerating research and treatment for rare disorders. An inside look at COMBINEDBrain's impactful services, including a biorepository with over 900 individuals, a free registry for disorder members, and Project FIND-OUT for early diagnosis. The innovative COMBINEDBrain Roadshow, bringing hope and support directly to families across the country. Don't miss this episode of Once Upon a Gene, where passion meets purpose. Tune in to be inspired by COMBINEDBrain's mission to make a difference in the world of rare diseases. 💖🎙
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Wow, a breakthrough article about the function of USP7, the gene that causes Hao Fountain Syndrome, represented by one of our longstanding member organizations, Foundation for USP7-Related Diseases https://lnkd.in/enUCWc3g
The Hao-Fountain syndrome protein USP7 regulates neuronal connectivity in the brain via a novel p53-independent ubiquitin signaling pathway
biorxiv.org
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Are you coming to the National Organization for Rare Disorders conference in DC a day early? Are you interested in finding cures for Rare Genetic Neurodevelopmental Disorders?
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Join the Brain Trust and make a difference for people with rare genetic neurodevelopmental disorders.
Hey, COMBINEDBrain is hiring a Post-Doctoral Fellow! If you are just finishing a PhD in neuroscience, biology, developmental psychology, or another related field, and you'd like to learn how to help rare genetic neurodevelopmental disorders move from diagnosis to cure, please send me an email at [email protected], or PM me. We will also accept applications from professionals with PhD level experience, who would like to change careers. Join the Brain Trust!!! You will make a huge difference. Ask Rachel Heilmann, Anna Pfalzer, Sarah Poliquin, Brittany Short!
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