| Carers |
|---|
| Organisation | Phone No. | Website / E-mail | What they do… |
| Carer UK | 020 7490 8818 | www.carersuk.org | Carer UK is a membership organisation that campaigns on carer rights and offers training to professionals |
| The Princess Royal Trust for Carers | 020 7480 7788 | www.carers.org | This is a support organisation with nationwide Carers Centres offering support, advice, information & services |
| Children |
|---|
| Organisation | Phone No. | Website / E-mail | What they do… |
| British Society for Paediatric Endocrinology & Diabetes | | www.bsped.org.uk | BSPED provides information on gland and growth disorders, including booklets. |
| Child Growth Foundation / Height Matters | 020 7608 0257 | www.childgrowthfoundation.org
www.heightmatters.org.uk | CGF has support, research funding, public education and growth monitoring Height Matters has an online discussion forum |
| Contact a Family | 020 7608 8700
Helpline
0808 808 3555 | www.cafamily.org.uk
www.makingcontact.org
(web-based family linking service)
Email: info@cafamily.org.uk | Contact a Family offers support and services to families including a helpline, nationwide contacts, information for professionals, developmental advice to support groups, informational materials and campaigning. |
| Education and Resources for Improving Childhood Continence (ERIC) (Nightime bedwetting and soiling) | Helpline
0845 370 8008 | www.eric.org.uk | ERIC has information, support, online forums for all ages, professional information, product sales, literature, newsletter, research, practical advice and a helpline. |
| Magic Foundation | | www.magicfoundation.org | USA Support organisation for children with growth disorders |
| Metabolic Diseases in Children (CLIMB) | 0800 7336 3181 | www.climb.org.uk | CLIMB funds research, provides information, support and advice and supports families with grants and by educating professionals |
| Young Minds Trust | 020 7336 8445 | www.youngminds.org.uk | Young Minds Trust offers services to protect young people’s mental health including a helpline, patient information, campaigning and many publications |
| Condition-Specific Information |
|---|
| Organisation | Phone No. | Website / E-mail | What they do… |
| Addison’s Disease Self Help Group | | www.adshg.org.uk | ADSHG offers extensive information, newsletters and campaigning |
| Androgen Insensitivity support | | www.medhelp.org/www/ais | AIS has support groups, online support, information, campaigning, newsletters, links to other organisations in different countries, information in different languages |
| Anorchidism Support Group | 01708 372 597 | Freespace.virgin.net/asg.uk | Telephone advice and support, newsletter, linking members together |
| Brain Tumour Action | 01506 438 164 | www.braintumouraction.org.uk | Self-help news and discussion group, online forum, support groups, befrienders |
| Cancer (BACUP) | Helpline
0808 800 1234 | www.cancerbacup.org.uk | Cancer BACUP offers practical advice, nurse helplines and other information |
| Congenital Adrenal Hyperplasia | 01525 717536 | www.cah.org.uk | CAH has support groups, conferences, newsletters, books, leaflets and information |
| Cushing’s (ACTH) | 01628 670 389 | www.cushingsacth.co.uk | Cushing’s ACTH has friendly and informative leaflets and a newsletter |
| Diabetes UK | 020 7427 1000
Careline
0845 120 2960 | www.diabetes.org.uk | Diabetes UK works for people with diabetes, funding research, campaigning and helping people live with the condition |
| Infertility Network UK | 08701 188 088 | www.infertilitynetworkuk.com | Membership organisation with an advice line, regional network, helpline, local groups, medical advisors, leaflets, factsheets & product sales |
| Irritable Bowel Syndrome (IBS) Network | Helpline
0114 272 3253 | www.ibsnetwork.org.uk | All helpline calls answered by specialist nurses, advice, information and support |
| Kallmanns Syndrome (HYPOHH) | | http://www.kallmanns.org/
| Membership organisation with an online forum and newsletter |
| Klinefelter’s Syndrome | | www.klinefelter.org.uk
email: | Membership organisation which has a newsletter and works to create awareness |
| Menopause | Helpline
01293 413 000
(staffed by nurses) | www.amarantmenopausetrust.org.uk | Amarant Menopause Trust has a helpline, information, GP Visit Checklists, list of UK clinics, leaflets (must be purchased) and information on alternative therapies |
| Menopause – Premature (Early Menopause) | | www.daisynetwork.org.uk | The Daisy network is a membership organisation with networkers, tele-counselling, factsheets, online forum, newsletter and books available to purchase |
| Multiple Endocrine Neoplasia (MEN) (Association for…) | 01423 780594 | www.amend.org.uk
email:
MEN1: liz.dent@amend.org.uk
MEN2: jo.grey@amend.org.uk | AMEND is a membership organisation with newsletters, telephone buddies, publications |
| Osteoporosis (National Osteoporosis Society) | Helpline
0845 450 0230
(staffed by nurses) | www.nos.org.uk
email: nurses@nos.org.uk
or
info@nos.org.uk | NOS is a membership organisation, awareness, prevention, diagnosis, treatment, helpline, support groups & information |
| Pre-menstrual Syndrome (National Association for…) | 0870 777 2178 | www.pms.org.uk | Online forum, newsletter, online information, membership, guidelines |
| Polycystic Ovary Syndrome (PCOS) | | www.verity-pcos.org.uk | PCOS has discussion boards, local groups, online information, factsheets, membership, newsletter & conferences |
| Restricted Growth Association | 01308 898445 | www.restrictedgrowth.co.uk
email:
office@restrictedgrowth.co.uk | The Restricted Growth Association has a newsletter, mutual support and encouragement, self-help, advisory booklets, membership, medical advice, welfare, counselling & works to create awareness |
| Septo Optic Dysplasia and Optic Nerve Hypoplasia | No contact number | www.focusfamilies.org | For Parents, Carers, Families and professionals of children with Septo Optic Dysplasia or Optic Nerve Hypoplasia UK Division of FOCUS |
| Sexual Dysfunction Association | Helpline
0870 7743 571 | www.sda.uk.net | SDA is an awareness, education, support membership organisation with newsletters and medical information |
| Turner’s Syndrome (The Turner’s Syndrome Support Society) | 01389 380 385 | www.tss.org.uk
email:
Turner.Syndrome@tss.org.uk | TSS offers membership, newsletter, publications (available for purchase), Lifelong Guidance and Support Book |
| Thyroid (British Thyroid Foundation) | 01423 709707 | www.btf-thyroid.org | BTF provides support, information, regional support groups, research funding and books available for purchase |
| Thyroid Eye Disease (TED Charitable Trust) | 01797 222 338 | www.thyroid-fed.org/members/TED.html
email: ted@tedct.co.uk | TED has support groups, helplines, awareness, newsletter, and offers research funding |
| Vitiligo Society | | www.vitiligosociety.org.uk | This is a membership organisation with newsletters, research funding, research participation opportunities and works to create awareness |
| Symptom-Specific Information |
|---|
| Organisation | Phone No. | Website / E-mail | What they do… |
| ‘ASSIST’ Trauma Care (Post-traumatic Stress Disorder) | 01788 560 800 | Email:
assist@traumatic-stress.freeserve.co.uk | |
| Changing Faces | 0845 4500 275 | www.changingfaces.org.uk
email: info@changingfaces.org.uk | Changing faces supports and represents people who have disfigurement, services for children |
| Hairline International | | www.hairlineinternational.co.uk | This is a membership organisation with newsletters, information on treatment and cosmetic options & support |
| The Migraine Trust | 020 7436 1336 | www.migrainetrust.org | The Migraine Trust is the UK’s leading medical research and patient support charity for the condition. |
| National Federation of the Blind | 01924 291 313 | www.nfbuk.org
email: nfbuk@nfbuk.org | Primarily a campaigning organisation |
| Obesity (Association for the Study of Obesity) | | www.aso.org.uk | Membership (with referral only), campaigning, study, regional groups, awareness & dissemination of information |
| Obesity The Obesity Awareness & Solutions Trust (TOAST) | 01279 866010 | www.toast-uk.org.uk
email: enquiries@toast-uk.org.uk | TOAST is an awareness, campaigning organisation with help and information line, online forum, support groups, training, services for children & membership |
| Partially Sighted Society | 01302 323 132 01302 368 998 | Email: info@partsight.org.uk | |
| Relate | Appointment booking line:
0845 130 4016 | www.relate.org.uk | Relate offers advice, relationship counselling, sex therapy, mediation consultations & face-to-face support |
| Royal National Institute for the Blind (RNIB) | Helpline
0845 766 9999 (M-F, 9-5)
020 7388 1266 | www.rnib.org.uk
email: helpline@rnib.org.uk | RNIB provides specialist advice, support groups, information on eye conditions, making the most of the rest of your sight, registering as blind/partially sighted, benefits, rights and living with sight loss |
| Seeability | 01372 755 000 | www.seeability.org
email: enquiries@seeability.org | Seeability offers support to adults to achieve their potential. Services in Surrey, East Sussex, Somerset, Hampshire and Devon |
| Stress / Anxiety and Depression | Helpline
01622 717 656 (unchecked) | |
| Tall Persons Club | 07000 825512 | www.tallclub.co.uk | This is a membership organisation with practical, medical, psychological and social impact information as well as a chat room, articles and services for young people and teenagers |
| Information / Resources |
|---|
| Organisation | Phone No. | Website / E-mail | What they do… |
| GENERAL |
| RADAR Royal Association for Disability and Rehabilitation | 020 7250 3222 | www.radar.org.uk
email: radar@radar.org.uk | Public toilet keys |
| Samaritans | 08457 90 90 90 | www.samaritans.org.uk | Suicide helpline |
| UK Self Help | | www.ukselfhelp.info | Exhaustive List of support and information organisations |
| INSURANCE |
| Lansdowne Woodward Financial Services Ltd. | 01202 862 080 | www.lansdowne-woodward.co.uk/ | Life, pension, investment. Refer to John Kane or Rob Bethel |
| Legal & General | 0800 197 3367 | www.legalandgeneral.com/health/ | Health Insurance |
| Tyser Financial Planning | 0207 397 4888 or 01286 284 361 | www.tyser.co.uk
email: info@tyser.co.uk | Insurance and risk management solutions |
| Insurance - Travel & Other Travel Information |
|---|
| Organisation | Phone No. | Website / E-mail | What they do… |
| ACE Travel Insurance | Freephone
0800 028 2396 | www.acetravelinsurance.com | Travel Insurance |
| City Bond | 0870 444 6431 | www.citybond.co.uk
email: info@citybond.co.uk | Travel Insurance (declare pre-existing condition) |
| Direct Travel Insurance | 0845 605 2700 | www.direct-travel.co.uk | Travel Insurance ) |
| Lansdowne Woodward Ltd. | 01202 874 989 | | General Insurance i.e., motor, travel |
| Free Spirit | 0845 230 5000 | www.free-spirit.com
email: freespirit@pjhayman.com | Travel Insurance for patients with pre-existing conditions |
| Frio Wallet | 01437 741700 or 741755 | www.friouk.com | Wallet that keeps medications cool |
| MCIS – Charity Insurance Specialists | 0121 233 2722 | | |
| Medi-cover | | www.medi-cover.co.uk | Travel Insurance |
| Travelcare | 0870 112 0085 | www.travelcare.co.uk | Travel Agent |
| Tripscope | Helpline
08457 58 56 41 | www.tripscope.org.uk | Information about disabled and elderly travel |
| NHS |
| NHS Direct | 0845 4647 | www.nhsdirect.hns.uk | |
| Patient Advocacy Liaison Service (PALS) | | www.doh.gov.uk
or
contact your local Primary Care Trust | |
| Personal Medical Identification Systems |
|---|
| Organisation | Phone No. | Website / E-mail | What they do… |
| Doctag | | www.doctag.net
email: info@doctag.net | USB based medical information units |
| MedicAlert | Freephone
0800 581420 | www.medicalert.org.uk | Different ranges of necklaces, pendants, bracelets, etc. |
| Medi-Tag | 0121 200 1616 | www.medi-tag.co.uk
email: info@medi-tag.co.uk | Pendants, bracelets and watches |
| Message in a Bottle / Emergency Medical Info stored in refrigerator | | www.lions.org.uk/miab.htm | Can get them from Lions Club, local chemists, doctors surgeries, Age Concern, Council Offices, Police Stations and often from Neighbourhood Watch schemes and Housing Associations |
| Yellow Cross | | Yellowcross-online.co.uk/page.home | Medical bags, containers, personal ID, translation cards |
