CSNK2A1 Foundation @csnk2a1
We are focused on finding an actionable treatment or cure for OCNDS.
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CZI stories — The Story Collider
CZI stories — The Story Collider
After being told “good luck” was the only plan for her daughter’s rare disease, a mother finds a path forward for her family and others around the world.
2026 Drive for Diagnosis Golf Classic Auction Benefitting All OCNDS Research Programs
2026 Drive for Diagnosis Golf Classic Auction Benefitting All OCNDS Research Programs
Friendship, Redefined: Two Teens, One Rare Genetic Condition
Friendship, Redefined: Two Teens, One Rare Genetic Condition
Discover a heartfelt story of connection and belonging as two teens with Okur-Chung Neurodevelopmental Syndrome form a meaningful friendship.
The Caregiver's Compass Training - 2026 May/June Session Survey
The Caregiver's Compass Training - 2026 May/June Session Survey
Take this survey powered by surveymonkey.com. Create your own surveys for free.
Register for CANDID webinar - May 5th at 2PM ET
Register for CANDID webinar - May 5th at 2PM ET
Welcome! You are invited to join a meeting: CANDID research update on the microbiome. After registering, you will receive a confirmation email about joining the meeting.
CNBC Cures & Citizen Health Article
CNBC Cures & Citizen Health Article
AI-powered healthcare startup Citizen Health is using the technology to focus on rare disease, helping manage patient lives as well as advance treatments.
Progress and priorities from the 2025 Connect & Collaborate Conference. Translational Science of Rare Diseases
Progress and priorities from the 2025 Connect & Collaborate Conference. Translational Science of Rare Diseases
Internship for PCORI Stakeholder Convening Project
PDF
·
Document
Internship for PCORI Stakeholder Convening Project
BTIG Charity Day - BTIG
BTIG Charity Day - BTIG
BTIG Charity Day. Make A Call. Make A Trade. Make A Difference. Each year, BTIG pools our global resources to host BTIG Commissions for Charity...
Trailer: Roadmap to Rare - The Roadmap to Rare | Podcast on Spotify
Podcast
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Podcast
Trailer: Roadmap to Rare - The Roadmap to Rare | Podcast on Spotify
The Roadmap to Rare · Episode
Roadmap to Rare Podcast | CSNK2A1 Foundation
Roadmap to Rare Podcast | CSNK2A1 Foundation
Explore challenges of raising children with rare disorders. Join our community for support & insights from parents & experts.
For immunocompromised kids, the return of measles is a crisis | STAT
For immunocompromised kids, the return of measles is a crisis | STAT
Hundreds of thousands of families are making life-or-death decisions as measles continues to spread.
RDLA Mentorship Application for 2026-2027 Survey
RDLA Mentorship Application for 2026-2027 Survey
Take this survey powered by surveymonkey.com. Create your own surveys for free.
OCNDS Awareness Day 2026: Global Light-Ups
OCNDS Awareness Day 2026: Global Light-Ups
Sun 5 Apr [PDT]: On April 5, communities around the world will come together to recognize International OCNDS Awareness Day. This year, 44 landmarks across multiple countries will light up in blue and green to raise a
Emerald | Resilience Studies
Emerald | Resilience Studies
CSNK2A1 FOUNDATION PILOT GRANT PROGRAM 2026 — Orphan Disease Center
CSNK2A1 FOUNDATION PILOT GRANT PROGRAM 2026 — Orphan Disease Center
CSNK2A1 Pilot Grant Program The CSNK2A1 Foundation is pleased to announce the CSNK2A1 Pilot Grant Program, which will support one (1) investigator-initiated research project aimed at advancing the biological understanding of OCNDS and/or accelerating the discovery or development of therapeutic ap
We Were Never Alone, You’re Never Alone
We Were Never Alone, You’re Never Alone
Register: Community Webinar featuring Grace Branger
Register: Community Webinar featuring Grace Branger
Join us for an upcoming Community Webinar featuring Grace Branger Topic: Amplifying the Voices of OCNDS. A Disease Concept Model This session will highlight how caregiver and patient experiences are being translated into structured data to better inform research, care, and future clinical trials in Okur-Chung Neurodevelopmental Syndrome (OCNDS).
A Rare Disease Story from Colorado
A Rare Disease Story from Colorado
Living Rare Living Stronger - Rare Disease Patient Event
Living Rare Living Stronger - Rare Disease Patient Event
The Living Rare, Living Stronger NORD Patient and Family Forum will be a truly patient first event. Through it all, we will maintain our objectives: networking, education, inspiration, hope and fun!
A Year in Review: Highlights of 2025
A Year in Review: Highlights of 2025
The Rare Advocacy Learning (RAL) program
The Rare Advocacy Learning (RAL) program
Gene Therapy Interest & Tolerance Poll
Gene Therapy Interest & Tolerance Poll
2026 The Caregiver's Compass Training Survey
2026 The Caregiver's Compass Training Survey
Carly Krull | Staff
Carly Krull | Staff
2026 Advocacy One-Pager | CSNK2A1 Foundation | The world
2026 Advocacy One-Pager | CSNK2A1 Foundation | The world
Citizen Health App - App Store
App Store
Citizen Health App - App Store
Research Explained: Identification and functional analysis of a novel CSNK2A1 frameshift variant in stillbirth
Research Explained: Identification and functional analysis of a novel CSNK2A1 frameshift variant in stillbirth
Simons Searchlight | Navigating Menstruation: Support for Caregivers of Individuals with Disabilities
Simons Searchlight | Navigating Menstruation: Support for Caregivers of Individuals with Disabilities
Empowering Patients 2026: A Cell and Gene Therapies Summit | ASGCT
Empowering Patients 2026: A Cell and Gene Therapies Summit | ASGCT
2026 ECHO Autism: Catatonia in Autism
2026 ECHO Autism: Catatonia in Autism
Coleman Hoedown Clip
Coleman Hoedown Clip
rare disease day light up for rare (evergreen)
rare disease day light up for rare (evergreen)
Foundations of CGT Module 1: Introduction to Cell and Gene Therapy | American Society of Gene and Cell Therapy
Foundations of CGT Module 1: Introduction to Cell and Gene Therapy | American Society of Gene and Cell Therapy
KK's Story
KK's Story
Webinar: Driving Change in Your State on Rare Disease Day
Webinar: Driving Change in Your State on Rare Disease Day
Rare Disease Fair
Rare Disease Fair
REN Publication: Multidisciplinary clinics
REN Publication: Multidisciplinary clinics
Rare Disease Day 2026
Rare Disease Day 2026
I Challenge You
I Challenge You
Rylee Crowell
Rylee Crowell
Sibling Panel Summary: Connect + Collaborate Scientific & Family Conference
Sibling Panel Summary: Connect + Collaborate Scientific & Family Conference
The 3rd (Not So Rare) Epilepsies ECHO Registration
The 3rd (Not So Rare) Epilepsies ECHO Registration
Home - Seizure Action Plans
Home - Seizure Action Plans
OCNDS (CSNK2A1) Speech & Language Research – Dr. Miya St. John | Conference 2025
OCNDS (CSNK2A1) Speech & Language Research – Dr. Miya St. John | Conference 2025
Research Explained: Rapid method for evaluation of CK2 enzymatic activity and CK2alpha/CK2beta-interaction in Escherichia coli cell lysates
Research Explained: Rapid method for evaluation of CK2 enzymatic activity and CK2alpha/CK2beta-interaction in Escherichia coli cell lysates
Support Young Investigator Draft 2026 | PledgeIt for Charities
Support Young Investigator Draft 2026 | PledgeIt for Charities
Science Snapshot - Gene Therapy Delivery to the Brain
Science Snapshot - Gene Therapy Delivery to the Brain
CSNK2A1 Foundation Awarded Funding to Advance Patient-Centered Research for Ultra-Rare Neurodevelopmental Disorders
CSNK2A1 Foundation Awarded Funding to Advance Patient-Centered Research for Ultra-Rare Neurodevelopmental Disorders
Access to Genetic Counselor Services Act | National Society of Genetic Counselors
Access to Genetic Counselor Services Act | National Society of Genetic Counselors
How to Create and Add Your CRID to Your Simons Searchlight Account - YouTube
How to Create and Add Your CRID to Your Simons Searchlight Account - YouTube
Okur-Chung neurodevelopmental syndrome - Wikipedia
Okur-Chung neurodevelopmental syndrome - Wikipedia
From Pakistan to Global Partnership: How One Medical Student Helped Inspire a Growing Rare Disease Internship Program
From Pakistan to Global Partnership: How One Medical Student Helped Inspire a Growing Rare Disease Internship Program
Simons Searchlight | A Family Guide: Understanding Genetic and Clinical Diagnoses
Simons Searchlight | A Family Guide: Understanding Genetic and Clinical Diagnoses
CK2 Butterfly Collective | The world
CK2 Butterfly Collective | The world
Citizen AI Advocate Patient Webinar
Citizen AI Advocate Patient Webinar
Webinar: Open Enrollment Essentials for Rare Disease Families
Webinar: Open Enrollment Essentials for Rare Disease Families
Making a Difference Through Advocacy: My Journey to the Dáil
Making a Difference Through Advocacy: My Journey to the Dáil
The Wait is Worth It!
The Wait is Worth It!
Parent Education Webinar Series Alternative Communication 101 - YouTube
Parent Education Webinar Series Alternative Communication 101 - YouTube
A Bee’s Lesson: How Small Efforts Create Big Impact in Rare Disease Advocacy
A Bee’s Lesson: How Small Efforts Create Big Impact in Rare Disease Advocacy
2025 CSNK2A1 Foundation Virtual Run, Walk & Roll: Boundless Possibilities
2025 CSNK2A1 Foundation Virtual Run, Walk & Roll: Boundless Possibilities
Shop Photo Cards & Holiday Stationery | Minted
Shop Photo Cards & Holiday Stationery | Minted
Youtube: Conference 2025 Recordings
Youtube: Conference 2025 Recordings
Submit Feedback | Epilepsy National Plan
Submit Feedback | Epilepsy National Plan
Family Planning Resource | CSNK2A1 Foundation
Family Planning Resource | CSNK2A1 Foundation
Your Personalized OCNDS AI Advocate | Citizen Health - Get instant answers from every detail of your medical history - all at your fingertips
Your Personalized OCNDS AI Advocate | Citizen Health - Get instant answers from every detail of your medical history - all at your fingertips
Michael Boland, PhD
Michael Boland, PhD
Simons Searchlight 2025 Q3 Report
Simons Searchlight 2025 Q3 Report
Rare Diseases and Generative AI: Patient & Parent Perspectives Survey
Rare Diseases and Generative AI: Patient & Parent Perspectives Survey
RARE EPILEPSY SURVEY
RARE EPILEPSY SURVEY
Project WELLCAST: Rare Disorder Caregivers' Experiences of BURNOUT
Project WELLCAST: Rare Disorder Caregivers' Experiences of BURNOUT
Terri’s Journey to Diagnosis
Terri’s Journey to Diagnosis
Nicki’s Journey to an OCNDS Diagnosis
Nicki’s Journey to an OCNDS Diagnosis
Family Stories Blog: Our Special Homecoming Ask
Family Stories Blog: Our Special Homecoming Ask
Support National Plan | Epilepsy Caucus
Support National Plan | Epilepsy Caucus
Making Sense of Health Data for Rare Diseases - NORD® Learning
Making Sense of Health Data for Rare Diseases - NORD® Learning
Curso gratuito en línea sobre datos de salud de NORD
Curso gratuito en línea sobre datos de salud de NORD
Webinar: Rare Disorder Caregivers’ Experiences of HOPE
Webinar: Rare Disorder Caregivers’ Experiences of HOPE
Dr. Dennis Lal’s Milestones Survey
Dr. Dennis Lal’s Milestones Survey
Global Genes and RDDC Rare Disease Curriculum Focus Group
Global Genes and RDDC Rare Disease Curriculum Focus Group
Science Snapshot – Gene Therapy
Science Snapshot – Gene Therapy
Webinar: Advancing Newborn Screening Together
Webinar: Advancing Newborn Screening Together
Research Explained: Clinical and molecular results in 15 Turkish patients with Wiedemann‑Steiner syndrome
Research Explained: Clinical and molecular results in 15 Turkish patients with Wiedemann‑Steiner syndrome
Time Converter and World Clock - Conversion at a Glance - Pick best time to schedule conference calls, webinars, online meetings and phone calls.
Time Converter and World Clock - Conversion at a Glance - Pick best time to schedule conference calls, webinars, online meetings and phone calls.
An Open Letter about OCNDS by Carley Faith Callahan
An Open Letter about OCNDS by Carley Faith Callahan
Navigating School and Beyond: Advocacy Tips for Rare Youth and Young Adults
Navigating School and Beyond: Advocacy Tips for Rare Youth and Young Adults
Project WellCAST Webinar Series - Internal Struggles: Navigating Anger, Shame, and Guilt
Project WellCAST Webinar Series - Internal Struggles: Navigating Anger, Shame, and Guilt
Start Genetic: Accelerate Answers with Genetic Testing
Start Genetic: Accelerate Answers with Genetic Testing
Tech Tuesdays: Exploring Seizure Detection Technology
Tech Tuesdays: Exploring Seizure Detection Technology
EpiMonitor by Empatica
EpiMonitor by Empatica
Back to School Supplies | Minted
Back to School Supplies | Minted
YouTube Video about Upcoming Conference
YouTube Video about Upcoming Conference
2025 PAB Application
2025 PAB Application
Educational Supports | CSNK2A1 Foundation
Educational Supports | CSNK2A1 Foundation
CSNK2A1 Foundation + Citizen Health
CSNK2A1 Foundation + Citizen Health
Understanding the Significance of Your Genetic Variant | CSNK2A1 Foundation
Understanding the Significance of Your Genetic Variant | CSNK2A1 Foundation
GeneReview Overview
GeneReview Overview
OCNDS One-Pager
OCNDS One-Pager
Project WellCAST Webinar Series: Real(istic) Talk: Sleep
Project WellCAST Webinar Series: Real(istic) Talk: Sleep
Register for SPACES (Catatonia and ASD) Webinar Series
Register for SPACES (Catatonia and ASD) Webinar Series
Science Snapshot – Clinical Research IDs
Science Snapshot – Clinical Research IDs
Simons Searchlight April 2025 Quarterly Report
Simons Searchlight April 2025 Quarterly Report
Simons Searchlight | How to Read the Vineland Adaptive Behavior Scales Growth Chart
Simons Searchlight | How to Read the Vineland Adaptive Behavior Scales Growth Chart
Sign up for a CRID - Unique Universal Clinical Research ID
Sign up for a CRID - Unique Universal Clinical Research ID
RDLA Advocacy Mentorship Application 2025
RDLA Advocacy Mentorship Application 2025
Available Now: Catatonia and Severe and Challenging Behaviors Webinar
Available Now: Catatonia and Severe and Challenging Behaviors Webinar
FREE Session with Genetic Specialist Sign Up
FREE Session with Genetic Specialist Sign Up
Monuments across the UK to be lit up to raise awareness of rare genetic syndrome
Monuments across the UK to be lit up to raise awareness of rare genetic syndrome
Rare Disease Day 2025: The Power of Genomics by Claire Whitehill
Rare Disease Day 2025: The Power of Genomics by Claire Whitehill
The Power of Support & Community: Interview with Jacquie Lopez
The Power of Support & Community: Interview with Jacquie Lopez
Claire's Story & the Power of Community Blog Post
Claire's Story & the Power of Community Blog Post
Michelle Proctor-Simms' Journey with OCNDS
Michelle Proctor-Simms' Journey with OCNDS
Why I Should Have Gotten the Autism Diagnosis for My Child Early On (or Why I Did Not)
Why I Should Have Gotten the Autism Diagnosis for My Child Early On (or Why I Did Not)
LIVE NOW! Niagara Falls - The Falls Cam
LIVE NOW! Niagara Falls - The Falls Cam
25 Million Wishes | Supporting kids with rare diseases
25 Million Wishes | Supporting kids with rare diseases
MDBR Press Release
MDBR Press Release
SUDEP Survey
SUDEP Survey
Chromosome Kids Like Me by Annette Fournier
Chromosome Kids Like Me by Annette Fournier
Simons Searchlight
Simons Searchlight
Simons Searchlight Dashboard
Simons Searchlight Dashboard
Beyond the Diagnosis: Finding Hope and Miracles in Everyday Moments
Beyond the Diagnosis: Finding Hope and Miracles in Everyday Moments
Rare, Resilient, Radiant: A Tribute to Harper and Rare Disease Day 2025
Rare, Resilient, Radiant: A Tribute to Harper and Rare Disease Day 2025
Webinar: Catatonia in Pediatric and Neurodiverse Populations by Dr. Joshua Ryan Smith
Webinar: Catatonia in Pediatric and Neurodiverse Populations by Dr. Joshua Ryan Smith
Harper is Rare: Rare Disease Day 2024
Harper is Rare: Rare Disease Day 2024
Rare Disease Day 2024 by Keri Ninness
Rare Disease Day 2024 by Keri Ninness
Let's Get Curious Podcast with Jennifer Sills
Podcast
·
Podcast
Let's Get Curious Podcast with Jennifer Sills
NORD Webinar: Advocacy Academy
NORD Webinar: Advocacy Academy
New Blog Post: Better Together by Connie Johnson
New Blog Post: Better Together by Connie Johnson
Parent Champion Application Guidelines 2025
Parent Champion Application Guidelines 2025
Science Snapshot: Growth Hormone
Science Snapshot: Growth Hormone
MINTED HOLIDAY CARDS FUNDRAISER
MINTED HOLIDAY CARDS FUNDRAISER
Science Snapshot - The Central Dogma: DNA, RNA, Protein
Science Snapshot - The Central Dogma: DNA, RNA, Protein
Research Explained: Neurobehavioral Evaluation Tool (NET)
Research Explained: Neurobehavioral Evaluation Tool (NET)
Research Explained: Motor Milestones & Tone Abnormalities in Neurodevelopmental Disorders (NDDs)
Research Explained: Motor Milestones & Tone Abnormalities in Neurodevelopmental Disorders (NDDs)
Spotlight on OCNDS Research: Featured by C2ST
Spotlight on OCNDS Research: Featured by C2ST
Better Together by Connie Johnson
Better Together by Connie Johnson
Monday Milestones by Connie Johnson
Monday Milestones by Connie Johnson
Dream Big with Jennifer Sills: Movies, Advocacy & Rare Disease Awareness
Dream Big with Jennifer Sills: Movies, Advocacy & Rare Disease Awareness
Dr. Rushing's Bee Blog Post about how small actions lead to big change
Dr. Rushing's Bee Blog Post about how small actions lead to big change
GIVING TUESDAY DONATE
GIVING TUESDAY DONATE
WEBSITE
WEBSITE
REGISTER WITH THE FOUNDATION TODAY!
REGISTER WITH THE FOUNDATION TODAY!
NEWLY DIAGNOSED FAMILIES
NEWLY DIAGNOSED FAMILIES
FDA Summary Report
FDA Summary Report
TRAIN Partnership
TRAIN Partnership
Research Explained: Microcephaly in OCNDS
Research Explained: Microcephaly in OCNDS
CDC Data and Statistics on Adults with Active Epilepsy
CDC Data and Statistics on Adults with Active Epilepsy
First Aid for Seizures
First Aid for Seizures
Molecular Psychiatry OCNDS Publication by the Rebholz lab
Molecular Psychiatry OCNDS Publication by the Rebholz lab
Rare As One Project: Empowering Rare Disease Patients Worldwide
Rare As One Project: Empowering Rare Disease Patients Worldwide
2024 #RAREis Global Advocate Grant
2024 #RAREis Global Advocate Grant
School toolkit
School toolkit
Unravel Biosciences and CSNK2A1 Foundation Press Release
Unravel Biosciences and CSNK2A1 Foundation Press Release
Cilia in OCNDS Research Webinar
Cilia in OCNDS Research Webinar
1st Foundation authored Publication: A research roadmap for Okur-Chung Neurodevelopmental Syndrome - Gabrielle V. Rushing, Jennifer Sills, 2024
1st Foundation authored Publication: A research roadmap for Okur-Chung Neurodevelopmental Syndrome - Gabrielle V. Rushing, Jennifer Sills, 2024
Augustana University Survey - Genetic Disorders
Augustana University Survey - Genetic Disorders
Join the Rare Patient Network
Join the Rare Patient Network
Eurordis Rare Barometer Voices Survey
Eurordis Rare Barometer Voices Survey
Simons Searchlight Community Update
Simons Searchlight Community Update
OCNDS Research with Citizen Webinar
OCNDS Research with Citizen Webinar
Sibling Symposium Registration
Sibling Symposium Registration
Understanding Child Development Webinar
Understanding Child Development Webinar
Petition CIRM Future Funding of Rare Genetic Disorders
Petition CIRM Future Funding of Rare Genetic Disorders
Mapping Rare New England Survey
Mapping Rare New England Survey
Research Explained: Inherited loss of function variant in CSNK2A1
Research Explained: Inherited loss of function variant in CSNK2A1
Research Explained: Improvement of variant reclassification in genetic neurodevelopmental conditions
Research Explained: Improvement of variant reclassification in genetic neurodevelopmental conditions
AAC Communication Video
AAC Communication Video
Kramer Davis Nashville Clinic Virtual Tour
Kramer Davis Nashville Clinic Virtual Tour
New OCNDS Research
New OCNDS Research
Kirsty’s story: Okur-Chung neurodevelopmental syndrome
Kirsty’s story: Okur-Chung neurodevelopmental syndrome
2024 OCNDS Virtual Symposium Videos
2024 OCNDS Virtual Symposium Videos
Family Support Program - Child Neurology Foundation
Family Support Program - Child Neurology Foundation
OCNDS Clinician Survey
OCNDS Clinician Survey
Simons Searchlight Quarterly Report
Simons Searchlight Quarterly Report
RESEARCH EXPLAINED: Implications for phenotype and genotype expansion
RESEARCH EXPLAINED: Implications for phenotype and genotype expansion
One Foot in Front of the Other: Navigating Anger By Jennifer Sills
One Foot in Front of the Other: Navigating Anger By Jennifer Sills
Podcast Episodes | Disability Parenting featuring Amber Reynolds
Podcast Episodes | Disability Parenting featuring Amber Reynolds
Health Care Transition Kits Feedback Group Application
Health Care Transition Kits Feedback Group Application
Whitehill Family Article
Whitehill Family Article
Why Sharing Your Rare Disease Story Can Help
Why Sharing Your Rare Disease Story Can Help
Effectively Communicate Your Rare Disease Journey to Healthcare Providers
Effectively Communicate Your Rare Disease Journey to Healthcare Providers
Sibling Research Study - Survey
Sibling Research Study - Survey
To the Newly Diagnosed: Top 5 Things You Should Know
To the Newly Diagnosed: Top 5 Things You Should Know
I Challenge You – CSNK2A1 Foundation
I Challenge You – CSNK2A1 Foundation
Our Regional Ambassadors
Our Regional Ambassadors
Rare Disease Drug Development Symposium
Rare Disease Drug Development Symposium
Funds Innovative Research in the Chow Lab to Expedite Potential Treatments for OCNDS
Funds Innovative Research in the Chow Lab to Expedite Potential Treatments for OCNDS
Awards Grant to TGEN: Dr. Huentelman to Study Patient-Derived Stem Cells to Advance OCNDS Research
Awards Grant to TGEN: Dr. Huentelman to Study Patient-Derived Stem Cells to Advance OCNDS Research
Project FIND-OUT
Project FIND-OUT
UCLA CHAMPION Study
UCLA CHAMPION Study
Collaboration w/ TREND Community to Gain Insights from Rare Disease Conversations
Collaboration w/ TREND Community to Gain Insights from Rare Disease Conversations
Register with the CSNK2A1 Foundation
Register with the CSNK2A1 Foundation
YouTube Video 2023 Dr. Rushing OCNDS Research Roadmap
YouTube Video 2023 Dr. Rushing OCNDS Research Roadmap
Post Research Roadmap Presentation Survey
Post Research Roadmap Presentation Survey
CSNK2A1 Foundation At A Glance
Leave a review!
Leave a review!
Family Resources
Family Resources
Gene Review Chart
Gene Review Chart
New Research Explained: Exome Sequencing in 16 Patients with PSIS
New Research Explained: Exome Sequencing in 16 Patients with PSIS
Research Explained - Inherited CSNK2A1 variants (New Research)
Research Explained - Inherited CSNK2A1 variants (New Research)
Meet our Parent Advisory Board
Meet our Parent Advisory Board
OCNDS Awareness Day | Genetic Alliance UK
OCNDS Awareness Day | Genetic Alliance UK
Genetic Disorders We Study - Simons Searchlight
Genetic Disorders We Study - Simons Searchlight
Probably Genetic Symptom Checker
Probably Genetic Symptom Checker
Seizure History Survey
Seizure History Survey
Articles
The job of a scientific director
The job of a scientific director
Appointment of Dr. Kimberly Goodspeed to SAB
Appointment of Dr. Kimberly Goodspeed to SAB
Engaging Our Shareholders: Pfizer Announces New Chief Investor Relations Officer - Pfizer Investor Insights
Engaging Our Shareholders: Pfizer Announces New Chief Investor Relations Officer - Pfizer Investor Insights
Sanford receives $2M grant to study brain abnormalities
Sanford receives $2M grant to study brain abnormalities
Jillian Kavanagh - Cures for the Commonwealth
Jillian Kavanagh - Cures for the Commonwealth
The Value of Trusting Your Gut by Valerie Tharp Byers
The Value of Trusting Your Gut by Valerie Tharp Byers
GRANT TO UNRAVEL BIOSCIENCES TO ACCELERATE ORPHAN CNS DRUG DEVELOPMENT
GRANT TO UNRAVEL BIOSCIENCES TO ACCELERATE ORPHAN CNS DRUG DEVELOPMENT
Finn Family advocates for genetic testing after son’s rare diagnosis
Finn Family advocates for genetic testing after son’s rare diagnosis
PAB Claire Whitehill Article re: OCNDS Awareness Day
PAB Claire Whitehill Article re: OCNDS Awareness Day
Empowering Families to Take Action - Simons Searchlight
Empowering Families to Take Action - Simons Searchlight
Tarr, Kassner file bill recognizing OCNDS Awareness Day
Tarr, Kassner file bill recognizing OCNDS Awareness Day
How to Read the Vineland Adaptive Behavior Scales Growth Chart - Simons Searchlight
How to Read the Vineland Adaptive Behavior Scales Growth Chart - Simons Searchlight
Blog Posts
Alphabet Soup by Elisabeth Mellinger
Alphabet Soup by Elisabeth Mellinger
How Newborn Genetic Screenings Can Change the Diagnosis
How Newborn Genetic Screenings Can Change the Diagnosis
A Mother's Reflection on Parenting an Adult Child with OCNDS
A Mother's Reflection on Parenting an Adult Child with OCNDS
Kirsty's School Hosts OCNDS Awareness Day
Kirsty's School Hosts OCNDS Awareness Day
National Sibling Day: Empowering Rare Siblings and Ways to Help Them Feel, Seen, and Heard
National Sibling Day: Empowering Rare Siblings and Ways to Help Them Feel, Seen, and Heard
Announcing Jamie Miller, new member of the Board of Directors
Announcing Jamie Miller, new member of the Board of Directors
OCNDS Mom Blog Post on Awareness Day
OCNDS Mom Blog Post on Awareness Day
Mum spent 8 years Googling child's symptoms before her diagnosis
Mum spent 8 years Googling child's symptoms before her diagnosis
Register For Family Zoom Calls
September OCNDS Family Zoom Call
September OCNDS Family Zoom Call
November OCNDS Family Zoom Call
November OCNDS Family Zoom Call
February 2026 OCNDS Family Zoom Call
February 2026 OCNDS Family Zoom Call
April 2026 OCNDS Family Zoom CAll
April 2026 OCNDS Family Zoom CAll
June 2026 OCNDS Family Zoom Call
June 2026 OCNDS Family Zoom Call
August 2026 OCNDS Family Zoom Call
August 2026 OCNDS Family Zoom Call
October 2026 OCNDS Family Zoom Call
October 2026 OCNDS Family Zoom Call
December 2026 OCNDS Family Zoom Call
December 2026 OCNDS Family Zoom Call
Our Partnerships
AGENDA
AGENDA
Rare & Ready
Rare & Ready
Orphan Disease Center
Orphan Disease Center
What You Can Do – Danny's Dose
What You Can Do – Danny's Dose
The Importance of Brain Donation and How to Donate
The Importance of Brain Donation and How to Donate
New Partnership! Epilepsies Action Network
New Partnership! Epilepsies Action Network
Autism BrainNet
Autism BrainNet
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