Helpful Charities
Helpful Charities
We have identified charities that we feel offer further support and specialised services that may be of benefit to you, our supporters. If you are struggling in any area of life that Nerve Tumours UK may not specialise in dealing with, then you may want to seek help from one of the charities listed below.
Feel free to visit their website or get in contact with any charity listed below.
ADDISS
ADDISS is the National Attention Deficit Disorder Information and Support Service. They provide resources about ADHD to anyone in need of assistance.
ADDISS is a registered charity dedicated to serving individuals and their families affected by ADHD and a wide range of comorbid conditions that either result from ADHD or have a greater impact because of ADHD.
Visit their website
ADHD UK
ADHD UK was founded in 2020 with a mission to help people affected by ADHD – either those that have the condition, or people close to them: family, friends, employers, and co-workers. They provide information and support for people with ADHD and people who think they may have ADHD.
Visit their website
Advice Local
Advicelocal can help you find information about: welfare benefits and tax credits; council tax, including exemptions and discounts; debt and money advice; housing and homelessness; employment and work issues; disability and social care; and asylum and immigration.
You can also find details of independent advice organisations across the UK that can help you. They will usually be able to offer free advice and support, but always check whether advice is chargeable first.
Visit their website
AMANDOS
A global association of people affected by Neurofibromatosis Type 2. AMANDOS is a group made up of patients and families who meet to raise awareness about NF2 and share their experience.
Their aim is to encourage, develop and promote the improvement of the quality of life of those affected by NF2.
Visit their website
Association of Acupuncture Clinicians
Association of Acupuncture Clinicians (AAC) represents practitioners who have studied acupuncture to degree level. Their practitioners are all skilled general clinicians and can treat a wide variety of symptoms and conditions.
There is a rapidly growing evidence base through research to support the many conditions that are helped through acupuncture. Visit their website to learn more and find an acupuncturist near you.
Visit their website
Association of Lipspeakers
The Association of Lipspeakers (ALS) is the professional body that represents lipspeakers. It aims to promote lipspeaking and its good practice and encourage the further development of lipspeaking as a communication service.
Visit their website
Association of Lipspeakers with Additional Sign
The Association of Lipspeakers with Additional Sign was set up to separate lipspeakers who can sign from those who can’t. This makes it easier for deaf people to find the lipspeaker that best matches their needs. This makes it clearer and easier for deaf people who specifically need a lipspeaker who can use signs to support meaning.
Visit their website
Autistica
Autistica is the UK’s leading autism research and campaigning charity. Their mission is to create breakthroughs that enable all autistic people to live happier, healthier, longer lives. They do this through research, shaping policy and working with autistic people.
Visit their website
British Blind Sport
British Blind Sport is the national sports charity for children and adults with sight loss in the UK. They use the power of sport to change the lives of people with sight loss and support them to lead more active, healthy and independent lives.
British Blind Sport aims to ensure that sport and leisure facilities are accessible to every blind or partially sighted person in the UK, with the intention of improving their physical health and self-esteem.
Visit their website
Business Disability Forum
The Business Disability Forum provides their Members and Partners with unlimited access to their confidential, expert, specialist Advice Service.
Their Advice Service is staffed by expert, specialist advisers who can help with a wide range of disability-related enquiries. They provide practical, pragmatic advice and can also advise on strategic issues and policies.
Visit their website
The Brain Charity
The Brain Charity helps people with all forms of neurological condition to lead longer, healthier, happier lives
There are more than 600 conditions affecting the brain, spinal cord and nervous system. They champion neurodiversity and provide practical help, emotional support and social activities for every single one.
Visit their website
Campaign Against Living Miserably (CALM)
Campaign Against Living Miserably (CALM) is taking a stand against suicide. They offer life-saving services, provoke national conversation, and bring people together to reject living miserably.
Their helpline is available 5pm - midnight every day.
Visit their website
Carers UK
Carers UK is the national membership charity for the millions of people who look after older, ill or disabled family and friends in the UK.
At some point in our lives, we’re all going to care or need care ourselves.
However it happens, Carers UK is there with support, information and advice, campaigning for lasting change and innovating to find new ways to make life better.
Visit their website
Cerebra
In the UK today there are around half a million children and young people with brain conditions that result in complex medical, educational and social support needs. Cerebra helps these children and their families discover a better life together.
Their aim is to provide research-driven, high-quality health and social care advice and support for the families of children with brain conditions from birth to the age of 16.
Visit their website
Changing Faces
Changing Faces is the UK’s leading charity for everyone with a scar, mark or condition on their face or body that makes them look different.
They provide advice, support and psychosocial services to children, young people and adults. They challenge discrimination and campaign for Face Equality: a world that truly values and respects people who look different.
Visit their website
Childhood Tumour Trust
Childhood Tumour Trust (CTT) brings together children and young people affected by NF1 and their families, through online and in person events.
Visit their website
Childline
Childline helps anyone under 19 in the UK with any issue they’re going through. You can talk about anything, whether it’s something big or small. Their trained counsellors are there to support you.
Childline is free, confidential and available any time, day or night.
Visit their website
Citizens Advice
Citizens Advice give people the knowledge and confidence they need to find their way forward, whoever they are and whatever their problem.
Their network of charities offers confidential advice online, over the phone and in-person, for free.
Visit their website
Citizens Advice Scotland
Citizens Advice Scotland give free, independent, confidential, impartial advice.
They look at the problems people bring to their advice services and campaign for change where it’s needed most.
They work for a fairer Scotland, where people are empowered and their rights respected.
Visit their website
Contact
Contact's vision is that families with disabled children feel valued and are strong, confident and able to make the decisions that are right for them. Their website provides advice and information about any concern you might have about raising a child with additional needs or a disability.
Contact provides free seminars to cater for specific needs within families and advises directly on the cost of living support that is available. You can also call Contact's free helpline on 0808 808 3555 between 9:30-5pm Monday to Friday or email helpline@contact.org.uk.
Visit their website
Council for Disabled Children (CDC)
The Council for Disabled Children is part of the National Children’s Bureau family. They are the umbrella body for the disabled children's sector with a membership of over 400 voluntary and community organisations and an active network of practitioners that spans education, health and social care.
Their vision is a society in which disabled children and young people's rights are respected, their aspirations supported and life chances are assured.
Visit their website
Cure NF2 Foundation UK
NF2 BioSolutions Europe is now the Cure NF2 Foundation UK. They are a patient-led, volunteer-run charity arm of the global Cure NF2 Foundation.
NF2 doesn't recognise borders and neither does the fight for a cure. The UK & Europe chapter connects patients, families, and researchers across the region, funding groundbreaking research at the University of Manchester.
Visit their website
Dementia UK
Dementia UK is the specialist dementia nursing charity that is there for the whole family. Their nurses, known as Admiral Nurses, provide free advice, support and understanding to help families care for their loved one.
As experts in the condition, their tailored, life-changing support helps families through the fear and confusion of dementia.
Visit their website
Disabled Living
Disabled Living offer free and impartial information about services for disabled individuals and those that support them. This includes advice about products and equipment from their specialist Equipz team.
Within their charity, they provide services that support those with bladder and bowel problems (Bladder & Bowel UK) such as a free helpline, as well as providing sensory rooms (Redbank House), exhibitions across the UK (Kidz to Adultz Exhibitions), equipment solutions, training courses and an online shop.
Visit their website
Epilepsy Sparks
Affected with epilepsy and psychiatric comorbidities? Epilepsy Sparks bridges the gap between patients, neurologists, researchers and scientists! You can find support, information and access to the latest research on their website.
Visit their website
Equality Advisory Support Service (EASS)
A government-funded helpline that provides information about discrimination and your rights across England, Scotland and Wales.
Visit their website
ERIC
ERIC, The Children’s Bowel & Bladder Charity is the UK’s leading charity supporting all children and teenagers with a bowel or bladder problem.
Their website provides resources and information and their freephone helpline is open Tuesday, Wednesday, and Thursday from 10am to 1pm on 0808 801 0343.
Visit their website
Face Equality International
The mission of Face Equality International (FEI) is to mobilise the many groups and organisations which support and represent people with facial differences and disfigurements, and to create the critical mass and solidarity needed to gain global attention for the campaign for face equality.
Visit their website
Family Fund
Family Fund’s mission is to make life better for families raising disabled and seriously ill children. They do this by providing grants, practical support, and information.
Their long-term vision is for an inclusive society where families raising disabled and seriously ill children have ready access to the support they need.
Visit their website
Gene People
Gene People run a Genetic Counsellor-led Helpline (0800 987 8987) for those affected by a genetic condition and their families, and support a Partnership Network of patient organisations working with those with genetic conditions.
They support everyone affected by a genetic condition: the individual, family members and carers, healthcare professions and people who need to know how to support someone living with a condition.
Visit their website
Genetic Alliance
Genetic Alliance UK is an alliance of over 220 organisations, charities and support groups working together to improve the lives of everyone in the UK living with genetic, rare and undiagnosed conditions.
They advocate for fast and accurate diagnosis, good quality care and access to the best treatments. They actively support progress in research and engage with decision makers and the public about the challenges faced by the community.
Visit their website
Good Things Foundation
Good Things Foundation is the UK’s leading digital inclusion charity. They are building a society where everyone can participate in a digital world.
Their digital inclusion services, which help people use and access the internet and technology, are delivered by organisations in communities nationwide.
Visit their website
Hearing Link Services
Hearing Link Services is part of Hearing Dogs for Deaf People. They transform the lives of people with hearing loss. Through their hearing dogs and personalised hearing support services, they tackle loneliness and help people reconnect with life.
Visit their website
Inspira
Inspira is an expert in employability skills. They help local people into work, improve their skills and open new opportunities.
They build strong partnerships across education, business, and government to deliver impactful programmes in the North West of England. These initiatives help people into work, address skills gaps, prepare young people for life after school, and connect classrooms with careers.
Visit their website
Jo Cox Foundation
The Jo Cox Foundation makes meaningful change on issues that the late Jo Cox MP was passionate about. Their vision is of society underpinned by an enduring belief that “we have far more in common than that which divides us”.
They make meaningful change on issues that the late Jo Cox MP was passionate about and work in three areas: they nurture stronger communities, champion respect in politics and advocate for a fairer world.
Visit their website
Kids
Kids is on a mission to create a world where all kinds of children and young people have all kinds of opportunities.
Creating life-changing opportunities by providing a wide range of support. From early years into adulthood. Learning and development. Playschemes, adventure playgrounds and youth groups. Parent support and mediation. Social connections and emotional wellbeing.
When the world blocks children and young people with special educational needs and disabilities, Kids speaks up.
Visit their website
Kidz to Adultz Magazine
Kidz to Adultz Magazine is designed with young people, parents, carers and professionals in mind. Every edition is packed with interesting articles, true stories, relevant promotions, advice and more.
It's a great way to stay engaged with the Kidz to Adultz community and keep up to date with the latest conversations around children and young people living with disabilities. View all previous editions and sign up by clicking the button below.
Visit their website
The Law Society Find a Solicitor
Run by the Law Society, Find a Solicitor is a free service for anyone looking for information about organisations or people providing legal services in England and Wales regulated by the Solicitors Regulation Authority (SRA).
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Medics 4 Rare Disease
Medics for Rare Disease is a registered charity driving an attitude change towards rare diseases amongst medical students and doctors in training. Their mission is to shape a medical profession that can provide people living with rare conditions a timely diagnosis and excellent care.
Their vision is of equitable healthcare for everyone. The Medics for Rare Disease approach to clinical training and practice ensures that everybody can receive compassionate, safe and informed healthcare – no matter how rare their condition is.
Visit their website
Mental Health Foundation
Mental Health Foundation is the only UK charity solely focused on preventing poor mental health and building and protecting good mental health.
They are tackling the rapidly-growing mental health crisis by changing the UK’s approach from managing mental ill health to preventing it, and fighting for those most at risk, especially young people.
Visit their website
Mind Infoline
Mind provides advice and support to empower anyone experiencing a mental health problem. The charity campaigns to improve services, raise awareness and promote understanding.
Their helplines operate in England and Wales. They provide a voice at the end of the phone when there's nowhere else to turn. Each line meets a different mental health or wellbeing need – from information and service finding to understanding mental health law.
Visit their website
National Autistic society
Since 1962 the National Autistic Society has been campaigning to transform lives, change attitudes and create a society that works for autistic people.
They transform lives, change attitudes and create a society that works for autistic adults and children.
Visit their website
Neurological Alliance
The Neurological Alliance is a coalition of over 70 organisations working together to transform quality of life and care for people with neurological conditions.
Neurological conditions, like cerebral palsy, stroke, dementia and epilepsy, can affect every part of your life, from eating and sleeping to working and playing.
Their mission is to unite and empower people affected by neurological conditions and their member organisations to influence health and care policy in England, so it reflects real-life experiences, ensuring that everyone affected by a neurological condition can access the support they need.
Visit their website
The Neurological Alliance of Scotland
An estimated one million people in Scotland live with a neurological condition that has a significant impact on their lives.
The Neurological Alliance of Scotland is an umbrella body of organisations that represent people with a neurological condition and those who support them. They work to improve the care and support that people receive.
Visit their website
NF Ireland
The Neurofibromatosis Association of Ireland (NF Ireland) was founded in 1985. NF Ireland provide a comprehensive range of services including a 24-hour Helpline, literature on the condition and information but its primary aim is to inform sufferers and their families of the disorder, supporting them and letting them know they are not alone with the condition.
The NF Ireland Helpline is operated by their dedicated team of Healthcare Advisors, Patient Ambassadors, and Family Support Officers, and can be contacted via phone or email.
Visit their website
NRCPD
The NRCPD is the national regulator of over 1,600 language service professionals including British Sign Language/English Interpreters and Translators, Lipspeakers, Notetakers, Speech to Text Reporters and Interpreters for Deafblind People.
At the heart of their work is the protection of d/Deaf and deafblind people, as well as maintaining public trust in language services. They register language service professionals and set the minimum standards for them, investigate complaints about their fitness to practise, and work to ensure the quality of language services nationally.
Visit their website
PAPYRUS
PAPYRUS Prevention of Young Suicide is the national charity dedicated to prevention of young suicide. Sadly, suicide is the biggest killer of people under the age of 35 in the UK.
HopeLine 24/7 is their free, confidential helpline. Here whether you’re struggling yourself or worried about someone else.
Visit their website
PAWS-GIST Clinic
PAWS-GIST is a UK-based alliance of medical specialists, patients, and Gastrointestinal Stromal Tumours (GIST) Cancer UK. PAWS-GIST clinics are run by Cambridge University Hospitals Foundation Trust drawing upon GIST specialists from across the NHS.
The clinics are part of a centre of expertise working to understand the causes and mechanisms of Gastrointestinal Stromal Tumour in children, young people and all with wild-type GISTs. Their work aims to improve treatment, provide highly specialised care plans and find a cure for this rare form of cancer.
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PIPP
PIP Professional Support provides support in relation to Personal Independence Payment (PIP), Adult Disability Payment (ADP), Employment and Support Allowance (ESA) and Universal Credit (UC) claims to other professional organisations. They also provide support with Assessment Advocacy and Online Form / Mandatory Reconsideration checking services.
General advice is always free of charge by email, WhatsApp and social media.
Visit their website
Power of Parenting (POP)
Power of Parenting (POP) aims to support 'Life As It Should Be' for foster children and their families.
Power of Parenting believes in equal opportunity for all children and recognises the invaluable work foster families do to enable children who are looked after, to have normal lives filled with warmth and kindness, created in safe, loving homes.
Visit their website
Rareminds
Rareminds Wellbeing Hub provides resources and information to help you live as well as possible with your rare condition.
Whether you have been living with your condition for some time, or if you are currently facing a particularly emotionally challenging period, you may find something in their Wellbeing Hub that will be helpful.
Visit their website
Samaritans
Samaritans is the charity that prevents suicide through the power of human connection.
Connecting people in crisis with trained volunteers who will always listen. People calling for change with those who need to listen. People who’ve been there before, with those struggling now. Call 116 123 for free, 24 hours a day, 365 days a year.
Visit their website
The Sandcastle Trust
The Sandcastle Trust walks alongside individuals impacted by rare genetic conditions and their families, offering services that support emotional wellbeing and resilience, reducing the risk of poor mental health.
Their vision is a future where every family in the UK impacted by a rare genetic condition will have access to high-quality services to support their emotional wellbeing and resilience.
Visit their website
Scope
Scope is a charity which exists to create a fair and equal society for disabled people. campaigning to transform attitudes to disability, tackle injustice and inspire action.
They create opportunities and provide information and support that empowers.
Visit their website
The Sequal Trust
The Sequal Trust is a communication aids charity that provides funding towards speech aids for disabled people that have communication disorders and severe learning difficulties.
By supplying devices such as light writers and Grid Pads they aim to bridge the communication gap and help individuals reach their full potential and live more fulfilling lives. They believe that everybody has the right to a voice, and are dedicated to helping those with incoherent speech or that are nonverbal.
Visit their website
Shaw Trust
Shaw Trust is a leading employment charity. They help people find and keep meaningful jobs, provide education and training for those starting out and those looking to progress in their jobs, champion community health and wellbeing to improve all aspects of life and help people into work, and support businesses to become better workplaces.
As the largest not-for-profit residential children’s home provider, they're improving outcomes for looked after children.
Visit their website
Shout
Shout is the UK's first and only free, confidential, 24/7 text messaging service for anyone who is struggling to cope.
Their website also has resources and tips to support you when you're feeling anxious, low, stressed or overwhelmed.
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Sibs
Sibs exists to support people who grow up with or have grown up with a disabled brother or sister. It is the only UK charity representing the needs of over half a million young siblings and over one and a half million adult siblings.
They run an online information service for children and young people aged 7-17, who have a brother or sister who is disabled, has special educational needs or a serious long-term condition.
Visit their website
The Sleep Charity
The Sleep Charity is one of the leading, independent expert voices on sleep issues in the UK. They aim to provide access to high quality information and advice to deal with most sleep issues, and ensure everyone understands the value of a good night’s sleep.
Visit their website
StepChange
StepChange offer free debt advice, and a range of solutions, tools and resources for people across the UK who are worried about money.
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Turn2us
Turn2us is a national charity offering information and practical help to people facing financial insecurity.
They support to those facing financial shocks and together they challenge the systems and perceptions that cause financial insecurity.
Visit their website
The VTCT Foundation
The VTCT Foundation is an independent charitable foundation working to improve the lives of those living with a visible difference. This means people who might have a scar, mark, or condition on their face or body that makes them look different. This can be something they are born with (congenital) or something that occurs or develops during their life.
Visit their website
Helpline
Give our Support Specialists a call on Mondays, Wednesdays & Fridays 9am-5pm. Find out more here.
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Cost of Living Support
Advice and support is available to help you with the cost of living.
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