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Partners and Affiliates

AltaVoice 

The AltaVoice Patient Insights Network contains data on more than 400 diseases. They collect, curate, coordinate and deliver data from patients and clinicians faster, and for far less than traditional registries.                              

Brain and Spine Foundation

The Brain and Spine Helpline is a service run by neuroscience nurses. The helpline covers all brain and spine conditions, from fairly common to the very rare, and can offer information and support on any medical or related social and emotional issues of concern.

If you have any questions about IIH, or any other neurological topic, call the Brain and Spine Helpline on 0808 808 1000 or email helpline@brainandspine.org.uk.

Blind Children UK

For information about their services contact services@blindchildrenuk.org
or call 0800 781 1444

 

Brain Awareness Week

Brain Awareness Week (BAW) is the global campaign to increase public awareness of the progress and benefits of brain research.  

Coalition for Imaging Bioengineering Research

The CIBR has over 180 members, including 99 patient advocacy groups, 49 academic Radiology Departments, 27 imaging societies, and 13 industry companies. Quoted from their website "Our patient groups represent the full spectrum of diseases that use imaging for their detection, diagnosis, and/or treatment. More than 90% of the diseases studied at the National Institutes of Health (NIH) use imaging, and CIBR is committed to having the same diversity in its membership. Together, these partners educate the public about imaging research and advocate for federal support of that research."    


National Voices

National Voices is the coalition of health and social care charities in England  

 

   

The Neurological Alliance

The only collective voice for 80 organisations working together to make life better for millions of people in England with a neurological condition.  

  

The Partially Sighted Society

Based in Doncaster - Call 01302 965195 or email: reception@partsight.org.uk or anita.plant@partsight.org.uk

PatientsLikeMe

Partnered with 500,000 people living with 2700+ conditions on 1 mission: to put patients first.

 

 

 

Rare Disease UK

Rare Disease UK (RDUK) has over 2,000 registered supporters including academics, clinicians, industry, individual members and patient organisations.  

Rare Disease Day

World RARE Disease Day is held on the last day of February every year to raise awareness for rare diseases, and improve access to treatments and medical representation for individuals with rare diseases and their families.  

   

RARE Foundation Alliance

The RARE Foundation Alliance is a coalition of over 300 rare disease organisations.

Royal National Institute of Blind People

Call the RNIB Helpline 0303 123 9999 or email helpline@rnib.org.uk the helpline is open

Monday - Friday 8.45am - 5.30pm

 

The Everylife Foundation Cure the Process

The CureTheProcess Campaign strives to inspire science-driven public policy that will increase the predictability of the regulatory process for rare disease treatments. 

 

 

The I H Research Foundation

The Intracranial Hypertension Research Foundation is  devoted to supporting the medical research of chronic intracranial hypertension.

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