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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.

Visit their website

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.  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. 

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 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.

Visit their website

#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.

Visit their website

Autistica are the UK’s leading autism research charity. Our vision is a long, healthy, happy life for autistic people and their families.

Visit their website
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.

Visit their website
Business Disability Forum

For employers, the Business Disability Forum offers advice to its member organisations.

Visit their website
Campaign Against Living Miserably (CALM)

The Campaign Against Living Miserably (CALM) is leading a movement against suicide, the single biggest killer of men under 45 in the UK and the cause of 18 deaths every day. 

They run a free and confidential helpline which runs 7 days a week for 7 hours each day for anyone who needs to talk about life's problems. They also support those bereaved by suicide through their Support After Suicide Partnership (SASP).

Help is at Hand is also a great resource on offer to those who have been bereaved.

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. 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.

Visit their website

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.

Visit their website

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.

Visit their website
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.

Visit their website
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.

Visit their website
Connection Coalition

Connection Coalition is a cross-sector network of organisations, charities, companies and groups united in the belief that we can build a better future for everyone by building strong relationships and connected communities. 

Visit their website

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

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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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Embracing Complexity

Embracing Complexity's mission is to help people living with neurodevelopmental and mental health conditions (NDCs) achieve the best outcomes they can by ‘working together’ to better understand their needs, join up services & support and accelerate action to create a future where people with neurodevelopmental conditions and their families enjoy the same opportunities and experiences as the rest of society.

Visit their website
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.

Visit their website
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 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

Visit their website
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.

Visit their website
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.

Visit their website
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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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.

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 here.

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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.

Visit their website
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.

Visit their website

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 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 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.

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.

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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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.

Visit their website

Scope is a national disability charity that campaigns to challenge and change negative attitudes about disability and provides direct services.

Visit their website
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.

Visit their website

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.

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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 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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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 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.

Visit their website
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.

Visit their website
Turn 2 us

Turn2us is a national poverty charity helping people when times get tough by providing practical financial support.

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NF2 Working Together: from a tentative diagnosis and beyond

Understanding the impact that a tentative diagnosis has on a parent. Information and access to the existing NTUK and Specialist Nerve Tumours medical and non medical care network.

NF1 Working Together Part 2: from a tentative diagnosis and beyond

Understanding the impact that a tentative diagnosis has on a parent. Information and access to the existing NTUK and Specialist Nerve Tumours medical and non medical care network.

NF1 Working Together Part 1: from a tentative diagnosis and beyond

Understanding  the impact that a tentative diagnosis has on a parent. Information and access to the existing NTUK and Specialist Nerve Tumours medical and non medical care network.

Masterclasses in NF: Surgery in NF2 - Michel Kalamarides & Andrew King

Masterclasses in NF: Surgery in NF2

Michel Kalamarides, MD, PhD, Hôpital Pitié-Salpêtrière , Paris, France

Prof Andrew King, MBBS FRCS FRCS(SN), Salford Royal Hospital, Manchester, United Kingdom. Member of the MAB of Nerve Tumours UK

Masterclasses in NF: Cognition and Behaviour in NF1: Phenotype and Treatment Approaches - Shruti Garg, Andre Rietman

Masterclasses in NF: Cognition and Behaviour in NF1: Phenotype and Treatment Approaches

Dr Shruti Garg, MBBS, MRCPsych, MMedSci, PhD, Royal Manchester Children’s Hospital, United Kingdom. Member of the MAB of Nerve Tumours UK

Andre Rietman, PhD, Erasmus University Medical Center, Rotterdam, Netherlands

Masterclasses in NF: Emotional Challenges in NF1, NF2 and Schwannomatosis - Susie Henley, Thomas Pletschko & Verena Rosenmayr

Masterclasses in NF: Emotional Challenges in NF1, NF2 and Schwannomatosis

Susie Henley, DClinPsy, PhD, Guy’s and St Thomas’ NHS Foundation Trust, London UK

Thomas Pletschko, PhD, Medical University of Vienna, Austria

Verena Rosenmayr, Clinical Psychologist, Medical University of Vienna, Austria

Masterclasses in NF: NF1 Pediatric Management - Rianne Oostenbrink

Masterclasses in NF: NF1 Pediatric Management

Rianne Oostenbrink, MD, PhD, Erasmus University Medical Center, Rotterdam, Netherlands

Masterclasses in NF: Associated Glioma in Children - the Optic Pathway and Beyond - Amedeo Azizi

Masterclasses in NF: Associated Glioma in Children - the Optic Pathway and Beyond

Amedeo Azizi, MD, PhD, Head of the Paediatric Neurofibromatosis Program and Paediatric Neuro-Oncology Program, Medical University of Vienna, Austria

Masterclasses in NF: NF1 Orthopedic Manifestations - Eric Legius and Christophe Glorion

Masterclasses in NF: NF1 Orthopedic Manifestations

Eric Legius, MD, PhD. Head of Clinical Genetics Department of the University Hospital Leuven, Belgium

Christophe Glorion, MD, PhD, Department of Paediatric Orthopedic and Traumatologic Surgery, Hopital Necker-Enfants Malades, Paris, France. 

Masterclasses in NF: NF1 Malignant Peripheral Nerve Sheath Tumours - Rosalie Ferner and Viktor-Felix Mautner

Masterclasses in NF: NF1 Malignant Peripheral Nerve Sheath Tumours

Prof Rosalie Ferner, Consultant Neurologist and Lead Clinician for Neurofibromatosis, Guy's and St. Thomas' NHS Foundation Trust, London. Member of the MAB of Nerve Tumours UK and Trustee of Nerve Tumours UK

Viktor-Felix Mautner, MD, PhD. University Medical Centre in Hamburg-Eppendorf, Germany. Head of NF Outpatient Department

Masterclasses in NF - Neurofibromatosis Type 1: Cutaneous Neurofibromas - Pierre Wolkenstein and Sirkku Peltonen

Masterclasses in NF - Neurofibromatosis Type 1: Cutaneous Neurofibromas

Pierre Wolkenstein, MD, PhD. Hopital Henri-Mondor, Paris, France. Head of the Department of Dermatology

Sirkku Peltonen MD, PhD. University of Gothenberg, Sweden. Professor of Dermatology

INFER (International NF Educational Resources) is a series of online educational lectures for medical professionals by leading neurofibromatosis experts. The Masterclasses take place online approximately once a month, each on a different topic, and include real-time interaction between the expert presenter and the participants. The presentations are conducted in English, with real-time audio interpretation available in 6 additional languages: French, German, Italian, Portuguese, Russian, and Spanish. A recording of each INFER masterclass is then be made available online in each language for those who could not attend an event. INFER is an initiative of Children’s Tumor Foundation Europe, supported by an educational grant from AstraZeneca.

BPNA Keynote Lecture - Prof Rosalie Ferner - Neurofibromatosis 1 in the 21st Century

‘Neurofibromatosis 1 in the 21st Century’

Keynote Lecture at the 48th British Paediatric Neurology Association Annual Scientific Meeting on 21st January 2022

Prof Rosalie Ferner, Consultant Neurologist and Lead Clinician for Neurofibromatosis, Guy's and St. Thomas' NHS Foundation Trust, London. Member of the MAB of Nerve Tumours UK and Trustee of Nerve Tumours UK