Helpful Charities
14 October 2017
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 we at Nerve Tumours UK may not specialise in dealing with, then you may want to seek help from one of the charities listed below that does.
Feel free to visit their website or get in contact with any charity listed below that will be able to support you.
Advice Local
This site has some information on specific topics, and a searchable map to find an adviser local to you. Many advisers on their database may be able to offer free advice and support, but always check whether the advice is chargeable before beginning.
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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.
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Association of Acupuncture Clinicians
Association of Acupuncture Clinicians (AAC) represents practitioners who have studied acupuncture to degree level. Our practitioners are all skilled general clinicians and can treat a wide variety of symptoms and conditions. Acupuncture has been practiced for thousands of years and is a holistic system of treatment that looks at the whole body, all symptoms, the mind and emotions. There is a rapidly growing evidence base through research to support the many conditions that are helped through acupuncture. Please visit our website to learn more and find an acupuncturist near you.
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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.
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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 will make it easier for deaf people to find the support professional 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.
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AttentionUK
#AttentionUK is a campaign about one of the few mental health disorders that hasn’t become less stigmatised in the UK over the last decade. That disorder is Attention Deficit Hyperactivity Disorder, better known as ADHD.
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Autistica
Autistica are the UK’s leading autism research charity. Our vision is a long, healthy, happy life for autistic people and their families.
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British Blind Sport
British Blind Sport help blind and partially sighted people to get active and play sport. They encourage adults and children to participate in activities at all levels, from grassroots to the Paralympic Games. British Blind Sport prides themselves on making a visible difference through sport as they know that taking the first step into participating in a sporting or recreational activity can change lives for the better.
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Business Disability Forum
For employers, the Business Disability Forum offers advice to its member organisations.
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The Brain Charity
The Brain Charity offers emotional support, practical help and social activities to anyone with a neurological condition and to their family, friends and carers.
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Campaign Against Living Miserably (CALM)
We’re the Campaign Against Living Miserably (CALM) and we’re taking a stand against suicide. That means standing against feeling hopeless, standing up to stereotypes and standing together to show life is always worth living.
Every week 125 people in the UK take their own lives. CALM exists to change this - by offering life-saving services, provoking national conversation, and bringing people together to reject living miserably.
Their Helpline is available 5pm - midnight every day.
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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. It can happen suddenly – a birth, an illness, an accident – or it can start slowly, as our loved ones grow older and live longer with disability.
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.
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Cerebra
Cerebra is the charity dedicated to helping families with children with brain conditions discover a better life together.
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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.
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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.
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Childline
Childline is there to help 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.
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Citizens Advice
They 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.
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Citizens Advice Scotland
Ciutizens Advice Scotland give free, independent, confidential, impartial advice.
We look at the problems people bring to their advice services and campaign for change where it’s needed most.
We work for a fairer Scotland, where people are empowered and their rights respected.
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Contact
Contact is the charity for families with disabled children. Contact's 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.
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Dementia UK
Dementia UK is the specialist dementia nursing charity that is there for the whole family. Its nurses, known as Admiral Nurses, provide life-changing support with all aspects of dementia, including via its free Helpline and virtual clinic appointments.
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Disabled Living
Disabled Living offer free, impartial information about services for disabled individuals and those that support them. This includes advice about products and equipment from our specialist Equipz team.
Within our charity, we 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.
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Epilepsy Sparks
Affected with epilepsy & psychiatric comorbidities? Epilepsy Sparks bridges the gap between patients, neurologists, researchers & scientists! You can find support, info & access to the latest research on their website.
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Equality Advisory Support Service (EASS)
A government-funded helpline which assists individuals on issues relating to equality and human rights, across England, Scotland and Wales.
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ERIC
ERIC provides information and support to families about bowel & bladder conditions including bedwetting, daytime wetting and chronic constipation & soiling.
Their website provides resources and information and their freephone helpline is open 4 days a week on 0808 169 9949
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Face Equality International
Their aim is to improve the life prospects of any person anywhere in the world who has a facial difference or disfigurement, an unusual-looking, scarred or asymmetrical face (or body) from any cause.
The mission of Face Equality International (FEI) is to mobilise the many groups and organisations, big and small, national and international, which support and represent people with facial differences and disfigurements and thereby to create the critical mass and solidarity needed to gain global attention for the campaign for face equality.
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Family Fund
Family Fund is the UK’s largest charity providing grants for families on low incomes raising disabled or seriously ill children and young people.
They believe that all families raising disabled or seriously ill children and young people should have the same choices, quality of life, opportunities and aspirations as other families. Beginning with those on low incomes, and considering all conditions against our own eligibility criteria (based on the social model of disability), they aim to make a difference to outcomes for disabled or seriously ill children and young people and the lives of the families raising them across the UK.
Visit their website
Gene People
Gene People provides support and information to those affected by any genetic condition in the UK through their helpline (0800 897 8985) and their web resources. They also run a Partnership Network of condition-specific support groups, and participate in national policy initiatives to represent the views of the genetic conditions community.
Visit their website
Genetic Alliance
They are the national charity working to improve the lives of patients and families affected by rare, genetic and undiagnosed conditions. They are an alliance of over 200 patient organisations.
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Good Things Foundation
Good Things Foundation is a social change charity, improving lives through digital. We help fix the digital divide alongside our community network of partners – consisting of libraries, community centres, grassroots enterprises and other social initiatives – across the UK and further afield.
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Hearing Link Services
We are part of Hearing Dogs for Deaf People, a charity that provides a wide range of personalised hearing support services and trains highly skilled hearing dogs – because nobody with hearing loss should feel alone.
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Inspira
They are a leading career management and personal development organisation operating in the North West of England.
Their mission is to empower young people and adults with the skills and confidence they need to reach their potential in life and work.
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Jo Cox Foundation
The Jo Cox Foundation makes meaningful change on issues that the late Jo Cox MP was passionate about.
We are a small charity and, like Jo, we believe that a kinder, fairer and more connected world is possible. Underpinning this belief is the understanding that we have more in common than that which divides us. As we work to make change, we follow Jo’s example of collaborating with others and bringing people together to achieve more than we can alone.
We work in three areas: we nurture stronger communities, champion respect in politics and advocate for a fairer world.
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 here.
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Medics 4 Rare Diseases
With over 7000 rare diseases, it’s impossible to know about all of them. However it is possible for doctors to appreciate that rare diseases are collectively common and to recognise the exceptional challenges faced by patients with rare diseases.
M4RD provides education about the relevance of rare disease to everyday clinical medicine and equips doctors to manage their patients effectively. Our ultimate aim is to speed up the journey to diagnosis and improve the patient experience.
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Mental Health Foundation
The Mental Health Foundation is a charity whose vision is for a world with good mental health for all. Its mission is to help people understand, protect and sustain their mental health.
Prevention is at the heart of its work, because the best way to deal with a crisis is to prevent it happening in the first place.
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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.
Mind won't give up until everyone experiencing a mental health problem gets support and respect.
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National Autistic society
The National Autistic Society is the UK’s leading charity for autistic people. Since 1962, we have been campaigning for autistic people’s rights and providing support and advice to autistic people and their families.
They are here to 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.
Visit their website
NF2 BioSolutions UK & Europe
NF2 BioSolutions UK & Europe is a patient-led UK charity.
We exist to raise funds towards seeking a cure or preventative treatment for NF2. We fund UK research projects, raise awareness, and actively support our community with a focus on young adults.
We are the UK & Europe arm to the global NF2 BioSolutions organisation who vigorously support and advance existing and next-generation biomedical technologies, such as gene therapy and immunotherapy by sponsoring NF2 research at labs around the world.
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NF Ireland
The Neurofibromatosis Association of Ireland, known as NF Ireland, serves as a support network for those diagnosed and their families. Their main goal is to inform affected individuals and provide the latest information, aiming to help them lead healthy lives. NF Ireland acts as a voice for neurofibromatosis patients, offering services such as a 24-hour Helpline and more.
Visit their website
NRCPD
NRCPD exists to protect the public by regulating communication and language professionals who work with deaf and deafblind people.
Search their registers to find your local interpreters for: deafblind people, lipspeakers, notetakers, sign language interpreters, sign language translators and speech to text reporters.
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.
PAPYRUS run a free and confidential suicide prevention helpline HOPELINEUK. This service provides advice and support for those struggling with thoughts of suicide as well as providing advice to concerned others such as Teachers, G.P.’s, Carers, and Parents.
Visit their website
PAWS-GIST Clinic
PAWS-GIST is a UK based alliance of medical specialists, Gastrointestinal Stromal Tumours (GIST) Cancer UK and Patients. They have created a specialist clinic for Wild-type & Paediatric GIST patients.
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Power of Parenting (POP)
Power of Parenting (POP) aims to support 'Life As It Should Be' for foster children and their families.
We aim to bridge the gap between the opportunities that children who have a normal family see in the future and those that foster children see in theirs.
Learning new skills, academic support, career building, counselling, being socially active, social integration, financial support if needed - in short, working towards equal opportunities for every child.
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Rareminds
Rareminds Wellbeing Hub is here to help you navigate some of the more common emotional challenges that are often shared across rare conditions. Being diagnosed with, living with, or caring for someone with, a rare condition creates many psychological challenges. It impacts on your sense of yourself, your relationships, and how to live as well as possible with your particular condition. The future may look different to the one you had imagined, and there can be times when life will feel stressful, uncertain or lonely. It's very normal and understandable that there will be times when difficult thoughts and feelings emerge.
Whether you have been living with your condition for some time, or if you are currently facing a particularly emotionally challenging period, we hope you find something in our Wellbeing Hub that will be helpful.
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Samaritans
When life is difficult, Samaritans are here – day or night, 365 days a year. Whoever you are and whatever you’re facing, they won’t judge you or tell you what to do. They’re here to listen so you don’t have to face it alone.
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Scope
Scope is a national disability charity that campaigns to challenge and change negative attitudes about disability and provides direct services.
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Shaw Trust
Whether you need help accessing education, finding and keeping the right job, developing your career, or you want to get healthy and well, Shaw Trust can help you.
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Shout
Shout offer mental health crisis support through text messaging.
Their service is free and confidential to text from the following major networks: EE, O2, Three and Vodafone
These include – BT Mobile, Tesco Mobile, Virgin Mobile, iD Mobile, Sky, Telecom Plus, Lebara and GiffGaff.
Some Android phones issue a warning that you will be charged for texting them, provided you are on one of these networks - this warning is incorrect and you will not be charged.
Sibs
Sibs is the only UK charity dedicated to supporting the needs of siblings of disabled children and adults.
Siblings have a lifelong need for information. Sibs provides direct support to children through their Young Sibs information pages so that children can find information about disability and get answers to their questions.
They provide a range of support to adult siblings including email and peer support, tailored information guides, bespoke information and wellbeing events.
The charity also provides information to parents, professionals and sibling supporters through training and workshops.
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Stepchange
Financial issues - free debt advice that is based on a comprehensive assessment of your situation. Provision of practical help and support for however long it’s needed.
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The Law Society Find a Solicitor
You can find a local solicitor using the following tool on the Law Society website. However, this advice would usually be chargeable.
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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 neurological conditions and those who support them. In partnership with our members we inform policy, support improvements in services, care and support, and make sure that the experiences of people with neurological conditions - and those around them - are recognised.
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PIPP
PIP Professional Support
PIP Professional Support provides support in relation to Personal Independence Payment (PIP), Adult Disability Payment (ADP), Attendance Allowance (AA) and Work Capability Assessment (WCA).
The support provided ranges from support with the initial application form(s) and assessments, right through to Mandatory Reconsiderations and Tribunal Appeals in the event of an unsuccessful or incorrect claim award.
General advice is always free of charge by Email, WhatsApp and Social Media.
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The Sandcastle Trust
The Sandcastle Trust’s mission is to reduce inequalities in emotional health and wellbeing outcomes for families living with a rare genetic condition. Our services help to build positive family memories, strengthen family relationships, reduce isolation and improve resilience.
We also increase public awareness of the inequalities and barriers to emotional health and wellbeing that families living with rare genetic conditions face and affect positive change through our work.
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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.
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The Sleep Charity
The Sleep Charity provides advice and support to empower the nation to sleep better. It campaigns to improve sleep support and access to high quality information, raise awareness of the value of a good night’s sleep and promote understanding around the complexities of sleep. It wants everyone to share its vision that sleep is a vital component of health and wellbeing and that everyone living with sleep issues should have access to effective, consistent, evidence-based support.
Sleep is essential for our health and wellbeing yet it is estimated that 40% of the population suffer with sleep issues and many do not get the support that they need.
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Turn 2 us
Turn2us is a national poverty charity helping people when times get tough by providing practical financial support.
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The VTCT Foundation
We are an independent grant making charitable foundation, working to improve the lives of those living with a visible difference, through funding a wide range of both basic science and clinical research and service provision. We also host and support a network of individuals and organisations in the field called The Appearance Collective, with the aim of fostering better collaboration, reducing duplication and increasing impact.
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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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