Support groups and meetings
Support groups GIST Support UK Helplines and other support organisations
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| SUPPORT GROUPS | ||
| There are a growing number of sarcoma support groups run in association with local hospitals and cancer networks with specialist sarcoma treatment centres. Although these focus on their own patients they welcome sarcoma patients who may live locally and have been treated elsewhere. | ||
| London Support Group | ||
| patients from London and south-east - are all welcome | ||
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Contact: Karen Delin Email: londonsarcoma@yahoo.co.uk Location: Boardroom of Royal Marsden Hospital (meet beforehand in reception) |
Meets first Wednesday of the month (please note: changed from Monday). | |
| South Coast Sarcoma Support Group | ||
| patients from all across southern England, wherever they are treated | ||
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Email contact: sarcomasupportsouthuk@hotmail.co.uk Location: Bellis House 11 Westwood Road Southampton SO17 1DL |
Meets on Second Wednesday at 14.30 to 16.30 | |
| East Midlands Sarcoma Support Group | ||
| welcoming patients and carers from the Midlands and eastern counties | ||
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First meeting - Mon 8th December 2008: Email contact: emssg@live.co.uk Location: Helen Webb House 35 Westleigh Road Leicester LE3 0HH |
Group will meet monthly on second Mondays from 4pm to 6pm | |
| Manchester Sarcoma Group | ||
| patients from the Manchester Royal Infirmary and the Christie Hospital | ||
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Contact: Sue Hopwood (MRI) Tel:
0161 276 6167
(Please contact Sue if you wish to come. She will have information about any late changes and about speakers). |
Meets fourth Tuesday of each month at the Manchester Royal Infirmary.The meeting is in Seminar Room 2 (on the Wards 1&2 corridor). Meetings start at 7.00pm |
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| Newcastle and Tyneside | ||
| patients from the Freeman and City Hospitals | ||
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Support, information and guidance for anyone
affected by sarcoma in a friendly setting. Refreshments provided. Contact: Joy Dowd Tel: 0191 223 1202 or Group Secretary Mr Cuth Earl on 0191 520 1824 |
Meets first Monday in the month (except bank holidays) in Freeman Hospital's Education Centre from 7pm to 10pm. | |
| ROHBTS | ||
| the Royal Orthopaedic Hospital Bone Tumour Service | ||
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ROHBTS is run by nurses and parents from the
Birmingham Royal Orthopaedic Hospital. It is aimed principally at providing
telephone support for parents of children with bone tumours but welcomes
adult patients too. Contact: Ward 11 at the Royal Orthopaedic Hospital Tel: 0121 685 4000 or for family support 01584 856209 |
ROHBTS meets once a year for its AGM. | |
| GIST Support UK | |
| The only sarcoma specific national support group is for GIST patients. GIST Support UK and Sarcoma UK work closely together and twice yearly meetings are arranged. Information on further support can be found at the GIST Support UK website. | |
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| Helplines and other Support Organisations | |
| The telephone helplines run by Macmillan and by Cancer Help (part of Cancer Research UK) offer advice and support from trained nurses. They have reliable databases on sarcoma. | |
| Cancer Help: | freephone 0808 800 4040 |
| Macmillan: | freephone 0808 808 2020 |
| For local support services Macmillan Cancer Relief maintains a searchable online reference service which covers the whole UK. Macmillan (Can also be telephoned on freephone 0808 808 2020) | |
The Rarer Cancers Forum operates a number of email discussion and support groups. Rarer Cancers Forum.
NACCPO (National Alliance of Childhood Cancer Parents Organisations) maintains an index to its members online and most of these have support groups. NACCPO.
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| Email Support | ||
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Sarcoma UK sponsors an email support list which
is hosted on a secure system for us. New members are welcome. Please
click here for
further information. We also operate an email support list for carers. The New York based charity ACOR (Association of Cancer Online Resources) maintains a number of email support lists. One is generally for sarcoma and the others are for patients with specific tumour types. Most members are US based so if you sign up to a group you must remember that there are both organisational and cultural differences in healthcare. |
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| Ewings Sarcoma | Sarcoma (general) | Leiomyosarcoma |
| Osteosarcoma | Desmoid tumours | Liposarcoma |
| Childhood rhabdomyosarcoma | ||
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