Our Vision

To create a global community where families, healthcare professionals and researchers work together to ensure that every person diagnosed with Nicolaides-Baraitser Syndrome has every opportunity to reach their full potential.

OUR MISSION

The NCBRS Worldwide Foundation is a nonprofit organization that aims to support and educate families, carers and professionals who work with them. Together we will work to promote awareness and understanding of the syndrome. We will advocate for scientific research that increases the medical knowledge of Nicolaides-Baraitser Syndrome and best treatments.

partners

CoRDS
The NCBRS Worldwide Foundation has partnered with the Coordination of Rare Diseases (CoRDS) Program of Sanford Research, a not-for-profit research institution, to establish and maintain a registry of individuals with NCBRS.
Rare Diseases International
The NCBRS Worldwide Foundation has partnered with Rare Diseases International, they are a strong common voice for rare disease patients and their families worldwide. They are the global alliance of people living with rare diseases across all nationalities worldwide. 
Rare Disease Day
​The NCBRS Worldwide Foundation are friends of the Rare Disease Day campaign, Rare Disease Day takes place on the last day of February each year. Rare Disease Day raises awareness amongst the general public and decision-makers about rare diseases and their impact on patient's lives.
Genetic Alliance UK
Their an alliance of over 200 patient organisations who work with their members on campaigns, consultations and engagement projects to ensure their work accurately reflects the needs and concerns of patients and families affected by all types of genetic conditions.

​Gene People previously known as Genetic Disorders UK
Their mission is to be the leading source of information and support for both those affected by a genetic disorder, and the charities and patient groups that support them, by bringing together everyone’s combined experience in a place it can be shared.
Canadian Organization for Rare Disorders (CORD)
is a network of organisations who represent people affected by rare disorders. CORD's purpose is to provide a strong common voice advocating for a healthcare system and health policy for those with rare disorders.
FaceMatch - Australia
We're pleased to be working with FaceMatch, the aim of the FaceMatch Project is to improve the chance of obtaining a genetic diagnosis for children with significant developmental delay and people with intellectual disability using facial recognition technology.
Rare Revolution Magazine
The NCBRS Worldwide Foundation has partnered with Rare Revolution Magazine. A first of its kind, digital magazine giving a voice to those affected by RARE conditions and the charities that represent and support them.
Healthinote
The NCBRS Worldwide Foundation has partnered with Healthinote which enables doctors, nurses, and pharmacists to prescribe our trusted information to their patients.
Patient Worthy
The NCBRS Worldwide Foundation has partnered with Patient Worthy who connect those impacted by rare conditions with educational resources, advocacy groups, and news updates regarding rare disease research from across the globe.
Global Advocacy Alliance - Global Genes
The NCBRS Worldwide Foundation are pleased to say we are founding members of the Global Advocacy Alliance - Global Genes. We are a global community changing the way the world tackles rare disease and believe collaboration is the key to positive change.
National Council of Voluntary Organisations (NCVO)
We are proud to be members of the National Council of Voluntary Organisations. The NCVO champion charities and volunteers.

Contact US

NCBRS Worldwide Foundation
Kemp House, 152-160 City Road
​London, EC1V 2NX, United Kingdom​
Find us on Facebook:
​"NCBRS Worldwide Foundation"
Find us on Twitter:
​@ncbrsfoundation
Find us on Instagram:
​@ncbrs
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