# Encephalitis International

Encephalitis International (formerly the Encephalitis Society) is a not-for-profit organisation providing information and support for those affected by encephalitis, an inflammation of the brain, raising awareness and funding and collaborating on research on the condition.

## Objectives

Encephalitis International aims for a world without death and disability from encephalitis. They rebuild futures around the world by saving lives, accelerating awareness and driving research.
Encephalitis International is guided by these objectives:
EDUCATE: educate healthcare professionals with the knowledge to recognise, prevent and manage encephalitis effectively, ultimately improving patient outcomes.
EMPOWER: empower individuals affected by encephalitis, providing them with the expert resources and peer connections needed to rebuild their lives.
EXPAND: expand global scientific and medical understanding in the prevention, treatment, and impact of encephalitis. Through collaboration and knowledge-sharing, to break new ground in the field.
ELEVATE: elevating reach, to touch the lives of more people internationally, fostering a sense of community.
EQUIP: Generating income to deliver their vision effectively.
The organisation provides support and opportunities to connect for individuals and families whose lives have been impacted by encephalitis. It funds, collaborates, and promotes research into all aspects of this condition. It also raises awareness of encephalitis among the public and medical and health professionals.
The chief executive is Dr Ava Easton who is also a researcher (Honorary Fellow in the Department of Clinical Infection, Microbiology and Immunology, University of Liverpool) and global expert on encephalitis patient outcomes and quality of life.

## Work

Encephalitis International provides support and information to people affected by encephalitis directly or indirectly, raises awareness of encephalitis, and drives research into the neurological condition by working with a variety of professionals and organisations from health, social care, and education globally.

### Support and information

The Support Service at Encephalitis International provides support and information via telephone helpline, email, online chat on their website, and Zoom sessions on request. The charity holds virtual webinars and support groups, as well as face-to-face events, weekends for children and their families, and adult retreats. It also developed a global volunteer scheme called Team Encephalitis. It provides a language line on request for its worldwide audience.
Encephalitis International has a resource library on paper and online, and provides information in digital formats: e-learning, animations and videos (e.g., Youtube). In 2019 there were 20,157 downloads of information from the website, and enquiries increased by 50% from 49.5 million people across 189 countries through WED.
During the COVID-19 Pandemic, Encephalitis International introduced more online support initiatives, including an Encephalitis Support Forum, Virtual Gatherings and The Encephalitis Podcast.

### Research

Encephalitis International funds and collaborates on research into encephalitis and its consequences. It holds an international annual conference for professionals on the condition.
It works in conjunction with several universities to develop research, most notably Oxford University, University of Liverpool, and University College London (UCL) and King's College London.
It collaborates with a worldwide brain infectious group, and other encephalitis organisations worldwide.
The charity awards annual grant funding through seed funding, PhD and Fellowships. They also give travel bursaries to medical students and junior physicians in low-to-middle income countries to attend the Encephalitis Conference.
It works in partnership with other neurological charities and health organisations at national and international level, to support rapid diagnosis and access to services.
Its Scientific Advisory Panel consists of experts in encephalitis, including as of 2023 Tom Solomon, Angela Vincent, and Barbara Wilson. The vice chair of the panel is Benedict Michael, and the chair is Nicholas Davies.
A Global Impact Report developed by Encephalitis International identified a range of difficulties and solutions to the global impact of encephalitis which could save lives and improve the treatment and after-care of millions of people today and into the future. A working group was put together between the WHO and the Encephalitis International resulting in the launch of the report in and an initial meeting (2022) where global partners and stakeholders, including WHO, discussed how to tackle encephalitis urgently in the coming years.

### Fundraising

Encephalitis International is supported by a range of individual, company and grant-making supporters. Individual supporters are encouraged to take part in a range of physical, digital and other challenges through the charity's Fundraise For Us webpages as well as helping support the charity financially through making one-off, regular and appeal based donations. In 2023, Encephalitis International's "Don't Delay: Give Today" appeal raised over £43,000 from supporters across the world towards beginning the design and implementation of training opportunities for medical professionals globally.
Encephalitis International works with a range of local, national, and international organisations in partnerships that demonstrate their shared vision of a world aware of encephalitis, inspire and unite colleagues, and bring lasting benefits for the organisation and the 500,000 people affected by encephalitis worldwide. On their "become a corporate partner" webpages, these organisations are listed from a range of sectors such as pharmaceutical, diagnostic, legal, travel health and marketing. In 2023, the charity launched its 22 Club, inviting supporters from the business world to join this networking club with funds raised going towards the delivery of the award-winning awareness campaign World Encephalitis Day, taking place on 22 February each year.
Encephalitis International is supported by a range of charitable trusts and foundations as well as philanthropists. In 2021, the Changemakers Collaborative was launched to bring together individuals and organisations positioned to help fund crucial projects that will help achieve the charity's mission of a world without death and disability from encephalitis.

### Statistics

Over half a million people a year worldwide are affected by encephalitis. 6,000 children and adults in the UK are affected with the condition each year (Case for Support 2021 Pg.4)
Mortality, depending on the cause, is up to 40%.
77% of people around the world do not know what encephalitis is.
Encephalitis has a higher incidence than motor neurone disease, bacterial meningitis and multiple sclerosis in several countries.

## Activities

Encephalitis International provides support and information to people affected directly or indirectly by encephalitis, and to a variety of professionals and organisations from health, social care and education globally.
It holds weekends for families, and adult retreats and operates a global volunteer scheme called Team Encephalitis. The charity has information on paper and via the Worldwide Web. World Encephalitis Day was created by the charity in 2014, and fundraising events are run. The charity collaborates and funds research into encephalitis and its consequences, and holds an annual conference on the condition and annual competitions and travel bursaries for medical students and junior physicians. The charity works with other neurological charities and health organisations.
In September 2017, it was named the Charity Times Charity of the Year with an income less than £1 million.

## Awards

Under its old name, the Encephalitis Society has won a number of awards, including:
* Silver Chartered Institute of Public Relations (CIPR) Award for World Encephalitis Day 2014
* BMA Patient Information Awards 2016 – Highly Commended
* 2017 Charity Times' Charity of the Year; with an income less than £1 million
* Charity Times' Fundraising Technology of the Year (2018)
* Best use of Digital, Digital Impact Awards (2018)
* Charity Comms' Inspiring Communicator Award (2019) for Dr Ava Easton
* Social CEO of the Year Award in The Social CEO Awards (2019) for Dr Ava Easton
* Celebrity Charity Champion and Communications Campaign of the Year in the Third Sector Awards (2019)
* Best use of digital by a charity, NGO or NFP (bronze) in the 2021 Digital Impact Awards
* Nominated for Fundraising Team of The Year in the Third Sector Awards (2022)
* Fundraising Team of the Year at the 2022 Charity Times awards
* Dr Ava Easton was Highly Commended for Charity Leader of the Year at the 2022 Charity Times Awards.