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.
What you need to know
Please find all government advice on COVID-19 here.
Advice for cancer patients
Please find NHS England advice for cancer patients here.
For people who think they have been inaccurately sent communication about being vulnerable to COVID-19
Please find NHS information here.
Statement to those who received letters addressed to deceased patients
Please find NHS apology here.
Statement about letters sent in error to a cohort of patients
Please find NHS apology to families here.
Coronavirus and your wellbeing
Please find practical advice from Mind on how to best care for yourself during this uncertain period.
Advice for staying at home and away from others
Please find government advice on staying at home here.
Guidance on protecting people defined on medical grounds as vulnerable from COVID-19
Please find guidance for people, including children who are at very high risk of severe illness from COVID-19 because of an underlying health condition, and for their family, friends and carers here.
Support for the extremely vulnerable
Please find information on how to register your medical condition which makes you vulnerable to COVID-19 here (so you can ask for help getting deliveries of essential supplies like food).
Guidance for households with possible COVID-19 infection
Please find stay at home guidance from the government here.
Guidance for people who live in the same accommodation as the person infected with COVID-19
Please find an advice sheet for those living with someone infected with COVID-19 here.
Employment and financial support
School closures, education and childcare
Please find advice for parents and carers as well as information on cancelled exams here.
Healthcare workers and carers
Please find advice on NHS guidance for people working in healthcare, residential care and home care here.
How coronavirus is affecting public services
Candlelighters help families in Yorkshire with support, small grants, and holidays.
Information and support is available for children recently diagnosed or living with cancer. You can access CLIC Sargent's 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).
CLIC Sargent have an online community exclusively for young people who have, or have had, cancer. It can be accessed 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.
MacmillanMacmillan 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
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.
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.
Telephone: 0808 801 0401
A specialist Sarcoma Nurse is available to help answer your questions. The service is for anyone with concerns about bone sarcoma, including patients, families, friends, and health professionals.
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.
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 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 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.
Marie Curie Cancer Care
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.
My Name is NOT Cancer
Lots of bite-sized information is available on the website along with suggestions from others who have experienced cancer.
The Shine Network
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.
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.
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'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 provides support and information to parents and their children affected by upper limb difference.
Steps supports all those whose lives are affected by childhood lower limb conditions.
Steel Bones helps all amputee families to live life to the full.
Limbcare offer hope, advice and peer support to amputee and limb impaired individuals, communities, families and others impacted around them.
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 helps limb difference children and their families through peer support and friendships.
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 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 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. Please contact our Support and Information Service for more information.
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 firstname.lastname@example.org or by having a look on their Facebook page here.
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.
Phone: 07544 979 538
The Cabin and the Cottage sleep up to 6. Visiting families are also provided with spending money and the ferry fare over to the island.
Telephone: 0131 467 7420 (Monday - Friday, 11am - 5.30pm)
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
A holiday home in Blackpool with playroom, garden, hot tub, mini-cinema and self-catering kitchen.
Telephone: 01745 823088
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
Breaks are available on the Welsh coast, Disneyland Paris, and Florida.
The Leah Wilby Foundation
The caravan at Haven Seashore in Great Yarmouth (Norfolk) sleeps up to 6.
Or message the team on Facebook at https://www.facebook.com/KiansGift1/
The caravan is at Haggerston Castle, Berwick-Upon-Tweed (Northumberland).
Lennox Children's Cancer Fund
Tel: 01708 734366
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).
The Oakley Waterman Caravan Foundation
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 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.
Henry Dancer Days
For Ewing sarcoma and Osteosarcoma patients 18 or under. Henry Dancer Days offer grants of up to £500. Individuals can be referred by a CLIC Sargent worker or through Bone Cancer Research Trust.
For more information/referrals please contact the Support & Information Service/ Jane Nattrass at: email@example.com or here.
Small, one-off means-tested payments to help with the extra costs that living with cancer can bring.
Please find more information here.
To help with the immediate costs of cancer, CLIC Sargent give a grant of £170 to young people and families.
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 offer a grants programme aimed at supporting families who have received a cancer diagnosis during pregnancy, for women affected y 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.
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.
A Child of Mine
Telephone helpline: 07803 751229 between 9am and 5pm
Lots of guidance and signposting for anyone trying to cope following the death of a child
Telephone: +353 45 864 115
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).
Child Bereavement UK
Support and information line: 0800 02 888 40
Confidential support, information and guidance for families and professionals. Trained bereavement support workers are on-hand to take calls. (Mon-Fri 9am-5pm)
Child Death Helpline
Free 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
Telephone no: 0345 120 3785 (9.30 - 4.30 Mon to Fri)
A charitable organisation of bereaved parents, siblings and grandparents dedicated to the support and care of other similarly bereaved family members.
Cruse Bereavement Care
Free helpline: 0808 808 1677
The helpline is open 9.30am-5pm Mon & Fri, and 9.30am-8pm Tues, Weds & Thurs.
Marie Curie Cancer Care
Free telephone from mobile and landline: 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
24 hour helpline: 01460 55120
A 24hr listening line, monthly drop-in centres, befriending service, and subsidised counselling.
Helpline: 08452 03 04 05
Specialist support, training materials and publications.
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.