Here you will find other useful organisations and contact information covering a range of different aspects.
If you are looking for something specific and cannot find it, please do contact us.
Henry Dancer Days
As well as awarding hardship grants to children and adolescents diagnosed with primary bone cancer, Henry Dancer Days work with children with all forms of cancer, distracting them from the reality of their treatment and taking them into a world of pure imagination. It began in 2015 at the Paediatric Oncology wards at the Great North Children’s Hospital in Newcastle. They now run projects across the UK, the majority of which are supported by BBC Children in Need.
Hannah's Willberry Wonder Pony
Hannah’s Willberry Wonder Pony fund research into bone cancer, particularly Osteosarcoma and to provide Willberry’s Wishes to seriously ill people of all ages, or an immediate family member of someone suffering from a terminal condition.. A wish from Willberry could range from a VIP visit to an equestrian event, race meeting or show, meeting a favourite equestrian personality – both human and equine, a special yard visit or, perhaps a sit on a horse.
Solving Kids Cancer
Supports families affected by high-risk childhood cancers in the areas of neuroblastoma, brain tumours and sarcomas.
Cyclists Fighting Cancer
Cyclists Fighting Cancer give bikes, tandems and specially adapted trikes to children and young people who have been affected by cancer.
Candlelighters
Candlelighters help families in Yorkshire with support, small grants, and holidays.
Young Lives vs Cancer
Information and support is available for children recently diagnosed or living with cancer. You can access Young Lives vs Cancer online hub of information here.
The Joshua Tree
The Joshua Tree provides support for families in Cheshire who are affected by childhood cancer. Family activities, events and get-togethers (weekend and half-terms), support for schooling, practical advice and signposting to information, emotional support (one-to-one and groups).
Fruit Fly Collective
Fruit Fly Collective use creative practices to provide practical solutions to problems that surround the communication and understanding of health. Their short film provides support to parents when telling children about a cancer diagnosis. It provides guidance about how and when to tell them, and looks at different age groups and how they may feel and behave when they have been told.
Osborne Trust
The Osborne Trust offers free emotional and practical support for children of a parent with a cancer diagnosis and undergoing cancer treatment. Help is offered freely to children aged 16 years and younger with a parent with any type of cancer all over the UK.
Young Lives vs Cancer
Young Lives vs Cancer have an online community exclusively for young people who have, or have had, cancer. It can be accessed here.
Rip Rap
Support for teenagers who have a parent with cancer. More information here.
The Emma Cosgrove Foundation
They provide relief and support to teenagers and young people suffering from or affected by cancer. With Emma Cosgrove at the heart of their Foundation offering support, assistance in the form of a Small wish or Positive Experience, they hope make life a little easier. More information here.
JTV Cancer Support
A project whereby young bone cancer patients have made videos for other young bone cancer patients. A way to exchange cancer experiences creatively. Visit the website here.
Macmillan
Macmillan have a number of helpful resources available:- Free support line: 0808 808 00 00 (Mon - Fri 9am - 8pm)
- Video: Coping with bone cancer as a young adult
- Information about fertility in women
- Information about fertility in men
NHS
If you're aged between 19 and 24 and have been diagnosed with cancer, you may be able to receive your cancer care and treatment either in an adult cancer unit or one for teenagers and young adults. This means you can choose whether you'd like to be with older people or with people about your own age. This website aims to help you decide.
Real Share
A social network for young people with cancer, aged 16-25, who live in the South West of England. The South West is a large area. Young people with cancer may receive treatment or live a long way from others in a similar situation. Realshare helps forum members to chat with others in an informal, safe environment during what might be a difficult time. Visit them here.
Shine Cancer Support
A network for anyone living with cancer who is in their 20s, 30s or 40s. The Shine network provides social events, workshops, information, support, blogs and podcasts. Visit them here.
Teenage Cancer Trust
- Honest answers, sound advice: a young person's guide to cancer. Visit here.
- Feelings - Ideas and support to help you deal with your emotions and relationships with others. Visit here.
Teens Unite
Free events, blogs, stories and news, and social media for cancer patients aged 13-24. Sign up for free membership to get involved.
Hokey Cokey
Hokey Cokey is a Facebook group, which shares information and promotes social opportunities to Teenage and Young Adults with limb differences. Visit here.
The Christie Hospital, Manchester
Life after cancer may include a period of significant physiological and psychological adjustment; parts of the body may be altered or absent. In light of these changes, it is important to consider the impact on mental health and wellbeing. The Christie NHS Foundation Trust has a YouTube channel where they explain some of the ways to 'live with and beyond cancer'.
The Hospital also has series of useful and short podcasts covering practical topics such as: fatigue, exercise, eating, nutrition, worry, and returning to work.
Maggie's Centres
Maggie's is a charity providing free cancer support and information in centres across the UK and online. There are 23 centres currently open in UK with more being planned and built all of the time.
The Cancer Support page has advice and guidance on practical issues including work, travel, and finances, along with advice to help you cope with the emotional, relationship or health issues you might face during and after cancer treatment.
What's going on near you? Find out about support groups, where to get information, and how to get involved with Macmillan where you live.
Find out about the Recovery Package and the HOPE course also run by Macmillan.
Find out about support to help you plan ahead and make the most of the time you have left, including: your care needs, health and wellbeing, feelings and relationships, planning ahead, symptoms and medication.
If you'd like to be cared for in your own home, find out how a Marie Curie Nurse may be able to help.
9 hospices across the UK offer a wide range of care and support for terminally-ill patients and their families. Find out about the hospices here.
Lots of bite-sized information is available on the website along with suggestions from others who have experienced cancer.
The Shine Network provides social events, workshops, information, support, blogs and podcasts specifically aimed at those living with cancer in their 20's, 30's or 40's. The Network aims to help and support these adults in a way that suits their lifestyle, and ensure that they are a part of a confident, supportive and empowered community of young adults living with cancer.
Shine Bright Support
Mental health support for children and families affected by childhood cancer. Shine Bright support families at the beginning, in the middle and after treatment has finished. The charity are currently concentrating on families that are treated at Oxford Children’s Hospital and the ‘split’ site hospitals that offer treatment when the child is at home. In the future they would like to support families and children in treatment all over the country. Shine Bright also hope to develop training and education packages for professionals that have contact with families, who have received treatment, to help them understand how best to help them.
Mummy's Star
Mummy's Star is the only charity in the UK and Ireland dedicated to women and their families when the mother is diagnosed with cancer during pregnancy or shortly after a birth. Their aim is to support pregnancy through cancer and beyond. More specifically the charity focuses on supporting women and families where the:
- Mother is diagnosed with cancer during her pregnancy
- Mother is diagnosed with cancer within a year of her giving birth
- Mother dies, following a diagnosis of cancer in either of the time periods above
Jayne Sargent Foundation
Jayne Sargent Foundation is a charity based in Telford, Shropshire offering a cancer support group and therapist service at Meeting Point House, Southwater in Telford.
The Chordoma Foundation, United States
The Chordoma Foundation is a nonprofit organization based in the United States whose mission is to improve the lives of those affected by chordoma and lead the search for a cure. Their free, confidential Patient Navigation Service provides information, support, and assistance to chordoma patients and their loved ones to help them access the best possible care. Find out more about The Chordoma Foundation here.
Sarcoma Alliance, United States
The Sarcoma Alliance strives to improve the lives of people affected by sarcoma through accurate diagnosis, improved access to care, guidance, education and support. Find out more here.
Sarcoma Foundation of America
The mission of the Sarcoma Foundation of America (SFA) is to advocate for sarcoma patients by funding research and by increasing awareness about the disease. The organisation raises money to privately fund grants for sarcoma researchers and conducts education and advocacy efforts on behalf of sarcoma patients.
The Terry Fox Foundation, Canada
The Terry Fox Foundation was set up by Terry Fox when he was diagnosed with bone cancer in 1977. The foundation continues to grow and raise substantial funds for cancer research across Canada.
Association for Assistance to People with Sarcoma, Poland
Association for Assistance to People with Sarcoma is based in Warsaw, Poland. The organisation supports patients undergoing treatment or rehabilitation for sarcoma while providing training sessions and increasing the society's knowledge of sarcoma. The Bone Cancer Research Trust and The Association for Assistance to People with Sarcoma worked together to publish our information on Ewing Sarcoma as a booklet translated to Polish.
Amputee Coalition, United States
The Amputee Coalition, based in Washington, aim to empower people affected by limb loss to achieve their full potential through education, support and advocacy.
Amputation Foundation
The Amputation Foundation is a unique charity, that not only assists amputees but also medical professionals in their plight to give new amputees the best start, following amputation.
The Douglas Bader Foundation
The Douglas Bader Foundation exists to advance and promote the physical, mental and spiritual welfare of persons who are born without or have lost one or more limbs, or are otherwise physically disabled.
Port-er
Port-er's vision is to bring about better patient care for people with mobility challenges through national and international development. They award small grants depending on resources in an annual grant round to groups or individuals who need funding for project activities which align with their aims.
Finding Your Feet
Finding Your Feet support families affected by amputation or limb absence through a range of sporting initiatives and social inclusion projects to positively affect both physical and mental wellbeing.
Reach
Reach provides support and information to parents and their children affected by upper limb difference.
Steps
Steps supports all those whose lives are affected by childhood lower limb conditions.
Steel Bones
Steel Bones helps all amputee families to live life to the full.
Limbcare
Limbcare offer hope, advice and peer support to amputee and limb impaired individuals, communities, families and others impacted around them.
SCT
SCT (Skeletal Cancer Trust) is a small but effective charity based in the Sarcoma Unit of the Royal National Orthopaedic Hospital. They have a 'Live Life to the Full' campaign, providing patients with access to the best technology available in the manufacture of artificial limbs as well as advice on the options available to them. SCT is able to fund C-limbs, which enable high performance activities, and also special crutches and wheelchairs not available through the NHS. This fund is for applicants in the UK who have otherwise failed to find the level of support needed for such disability.
Limbo Foundation
Limbo Foundation helps limb difference children and their families through peer support and friendships.
Limbless Association
The Limbless Association provides information and support to the limb-loss community through a variety of existing programmes and services. They offer support to individuals of any age, whether they are about to have an amputation or are already living with congenital or acquired limb-loss and offer assistance and information to carers, family members and friends if they require it. You can find out more about The Limbless Association here or by calling 01245 216670
LimbPower
LimbPower was launched in November 2009 to engage amputees and individuals with limb impairments in physical activity, sport and the arts to improve quality of life and to aid lifelong rehabilitation.
Club HQ
Club HQ is ran by hindquarter amputees to provide support and advice. If you are a hindquarter amputee - or are about to become one - you may like to join this free, national support group offering information, mentoring support and annual get-togethers to share and discuss experiences.
OPUS
OPUS is a voluntary user group working alongside the Royal National Orthopaedic Hospital Trust (Stanmore) to provide an effective forum for all RNOH Orthotic and Prosthetic Department users, families and carers. OPUS aims to establish a network of peer support and a positive working relationship between users, centre clinicians and the Trust, providing opportunities for feedback and voicing concerns. You can find out more about OPUS and how they can help here, by emailing opus-rnoh@outlook.com or by having a look on their Facebook page here.
Amputee Coalition
The Amputee Coalition aim to empower people affected by limb loss to achieve their full potential through education, support and advocacy (based in USA).
Starworks
Starworks is a young people's prosthetic research collaboratin who bring children and their families together with key opinion leaders from the NHS, Industry, Clinical Academia and leading National Research Centres with capabilities in child prosthetics.
Barretstown
Telelphone: +353 45 864 115
Free weekend camps for the whole family at Barretstown Castle, Co. Kildare, Ireland. Camps take place in Spring and Autumn.
The Brianne Roberts Trust
Telephone: 01700 500 399
There is a wide range of holiday facilities and activities at the Hunters Quay Holiday Park in Dunoon.
Calums Cabin
Phone: 07544 979 538
enquiries@calumscabin.com
The Cabin and the Cottage sleep up to 6. Visiting families are also provided with spending money and the ferry fare over to the Isle of Bute.
CCLASP
Telephone: 0131 467 7420 (Monday - Friday, 11am - 5.30pm)
Email: info@cclasp.co.uk
Free family holidays to Seton Sands, Caravan in Berwick-upon-Tweed, and a cottage in Muthill. Free accommodation and passes for Disneyland Paris/ Florida. Also trips to Bournemouth, Flamingoland, Butlins etc. throughout the year.
Donna's Dream House
Email: lencurtis@btconnect.com
A holiday home in Blackpool with playroom, garden, hot tub, mini-cinema and self-catering kitchen.
Harrison16Fund
Telephone: 01745 823088
Email: info@harrison16fund.org
Harrison16Fund provides magical short breaks for children and teens living with cancer to visit Blackpool to view the illuminations.
Kids Cancer Charity
Telephone: 01792 480500
Email: enquiries@kidscancercharity.org
Breaks are available on the Welsh coast, Disneyland Paris, and Florida.
The Leah Wilby Foundation
Email: Leahs.Lounge@hotmail.co.uk
The caravan at Haven Seashore in Great Yarmouth (Norfolk) sleeps up to 6.
Kian's Gift
Email: laneslad@hotmail.com
Or message the team on Facebook at https://www.facebook.com/KiansGift1/
The caravan is at Haggerston Castle, Berwick-Upon-Tweed (Northumberland).
Tel: 01708 734366
Email: info@lennoxccf.org.uk
Holiday homes are available at Mersea Island (Essex coast), and on the south coast, just a few miles from the New Forest.
The Maria Hanson Foundation
Telephone: 01332 297011
Caravan holidays in Mablethorpe (Lincolnshire).
Email: theoakleywatermancharity@gmail.com
Breaks and entertainment passes are available at two Haven Holiday Parks in the UK.
Bone Cancer Research Trust Support and Information Service want to make things as easy and stress-free as possible. This is why we offer support to patients and families in applying for grants on your behalf. For more information or help with referrals please contact us via email or call us on 0800 111 4855.
Bone Cancer Research Trust
We offer a Financial Support Grant of £100 for all newly diagnosed primary bone cancer and bone tumour patients and a Travel Assistance Grant of £170 for primary bone cancer patients travelling for proton beam therapy at The Christie/UCLH or to take part in clinical trials. Please find more information on these grants and details of how to apply here.
Henry Dancer Days
For Ewing sarcoma and Osteosarcoma patients 18 or under. Henry Dancer Days offer grants of up to £300. Individuals can be referred by a Young Lives vs Cancer worker or through Bone Cancer Research Trust.
For more information/referrals please contact our Support & Information Service/ Jane Nattrass or visit their website here.
Macmillan
Small, one-off means-tested payments to help with the extra costs that living with cancer can bring.
Please find more information here.
Young Lives vs Cancer
To help with the immediate costs of cancer, Young Lives vs Cancer give a grant of £170 to young people and families.
Please find more information here.
Citizens Advice
Citizens Advice provides information on benefits and tax credits if you are working or unemployed, sick or disabled, a parent, a young person, an older person or a veteran. There is also information about council tax and housing costs, national insurance, payment of benefits and problems with benefit.
Please find more information here.
The Tom Bowdidge Youth Cancer Foundation
When a teenager or a young person is diagnosed with cancer there is often a huge financial burden that comes alongside it. The Tom Bowdidge Youth Cancer Foundation works with social workers to reach families most in need of a financial grant.
Please find more information here.
Mummy's Star
Mummy's Star offer a grants programme aimed at supporting families who have received a cancer diagnosis during pregnancy, for women affected by molar pregnancies and when there is the death of a mum, to provide financial relief when most needed of up to £500. Where there is a secondary cancer diagnosis, this can be increased to £700.
Please find more information here.
Strongbones
Help is offered to children suffering from all serious conditions of the bone including bone cancer. Strongbones' grant scheme is for disability equipment, manual wheelchairs, smart home, technology, supportive seating and trikes. Up to a maximum of 70% of the cost of equipment will be provided.
Please find more information here.
Turn2Us
Turn2Us provide financial support to help people get back on track when times are tough. Financial grants can also be searched for by UK postcode.
Please find more information here.
The Money Advice Service
Free, impartial money advice set up by the Government.
Please find more information here.
The Good Grief Trust
Email: hello@thegoodgrieftrust.org
Website: https://www.thegoodgrieftrust.org/
Help and hope in one place. Run by the bereaved for all types of bereavement.
Child Bereavement UK
Email: enquiries@childbereavementuk.org
Website: https://www.childbereavementuk.org/
Telephone helpline: 0800 02 888 40
Support provided to families to rebuild their lives, when a child grieves or when a child dies.
A Child of Mine
Email: contact@childdeathhelpline.org
Website: https://achildofmine.org.uk/
Telephone helpline: 01785 283434
Provide emotional and practical support to bereaved parents and families. They work in partnership with health care professionals to help improve care and support available when a child dies.
Barretstown
Email: info@barretstown.org
Website: https://www.barretstown.org/
Telephone helpline: +353 45 864 115 (Ireland)
Free weekend camps providing a supportive environment and quality time for the whole family that includes space for reflection and celebration. Camps take place at Barretstown Castle in County Kildare (Ireland).
The Good Grief Project
Website: https://thegoodgriefproject.co.uk/
Telephone: 07808 472 885
Dedicated to understanding grief as a creative and active process (through film, photography and other creative mediums).
Child Death Helpline
Email: contact@childdeathhelpline.org
Website: http://childdeathhelpline.org.uk/
Telephone helpline: 0800 282 986 (or 0808 800 6019 from a mobile)
Calls are answered by trained volunteers who have also lost a child, and understand the feelings that surround the death of a child.
The helpline is open 10am-1pm Mon-Fri, 1pm-4pm Tue & Wed, 7pm-10pm every evening.
The Compassionate Friends
Email: helpline@tcf.org.uk
Website: https://www.tcf.org.uk/
Telephone helpline: 0345 120 3785
A charitable organisation of bereaved parents, siblings and grandparents dedicated to the support and care of other similarly bereaved family members.
Cruse Bereavement Care
Website: https://www.cruse.org.uk/get-help
Telephone helpline: 0808 808 1677
Nationwide bereavement support.
Cruse Bereavement Care Scotland
Website: http://www.crusescotland.org.uk/
Telephone helpline: 0845 600 2227
Promoting the well being of people living in Scotland with a bereavement.
Breathing Space Scotland
Website: https://breathingspace.scot/how-we-can-help/what-we-do/
Telephone helpline: 0800 83 85 87
An alternative and easily accessible 'first stop' for when it becomes difficult to cope
Marie Curie Cancer Care
Website: https://www.mariecurie.org.uk/
Telephone helpline: 0800 090 2309
Resources to help you cope emotionally and practically, including: dealing with grief, organising a funeral, legal matters, supporting a child when someone dies.
Rosie Crane Trust
Email: contact@rosiecranetrust.co.uk
Website: http://www.rosiecranetrust.org/
Telephone helpline: 01460 55120
A 24-hour listening line, monthly drop-in centres, befriending service, and subsidised counselling.
Winston's Wish
Website: https://www.winstonswish.org/
Helpline: 08088 020 021
Support for children and young people after the death of a parent or sibling.
Samaritans
Email: jo@samaritans.org
Website: https://www.samaritans.org/
Telephone helpline: 116 123 (freephone)
For anyone struggling at any time for any reason.
Grief Talk
Website: https://www.griefencounter.org.uk/grieftalk/
Telephone helpline: 0808 802 0111
Brand new helpline from Grief Encounter, providing support for you, when you need it.
Bereavement Advice Centre
Website: https://www.bereavementadvice.org/
Telephone helpline: 0800 634 9494
A bereavement service provided by Co-op Legal Services. They give practical information, advice and signposting on the many issues and procedures that we can be faced with after the death of someone close.
Sue Ryder Online Bereavement Community
Website: https://community.sueryder.org/
If someone you love is dying or has died, their Online Community is a place to share experiences, get things off your chest, ask questions and chat to people who understand.
Bereavement Trust
Website: http://www.bereavement-trust.org.uk/
Telephone helpline: 0800 435 455 (6pm to 10pm every evening)
The Bereavement Trust was set up in 1992 to support those affected by the Hillsborough and Kegworth air disasters. Their Founder recognised a need for bereavement support in the evenings, which can be a particularly difficult and lonely time.
Dads.care
Dads.care have built a community of bereaved dads who support each other, whether they attend regularly or not; for a short period or over some years.
NHS Choices
NHS Choices is a national portal of health information that covers a huge range of different diseases and health information. This link takes you to the section on bone sarcomas (which is another term for primary bone cancer).
Cancer Research UK
Cancer Research UK has information about a very wide range of cancers, including primary bone cancer. They also provide helpline enabling people to speak directly with nurses. The number for this is: 0808 800 40 40 (Monday to Friday, 9am to 5pm)
The Irish Cancer Society
Provides a specialist cancer nurse helpline for Irish patients. The number for this is: 1800 200 700 (Monday-Thursday 9am-7pm, Friday 9am-5pm).
Macmillan Cancer Care
One of the UK's leading cancer support charities. Among its other fantastic work providing nurses and treatment centres, the Macmillan website provides an abundance of information to support cancer patients. This information ranges from health and disease information through to financial information for adult cancer patients. This link takes you to their section on primary bone cancer.