The following links provide information on the condition.
www.bladderexstrophy.com Association for the Bladder Exstrophy Community is an International support network for individuals who are affected by the condition. Local parent exstrophy support groups and health care providers working with patients and their families.
www.heainfo.org The internet home of the Hypospadias and Epispadias Association. Has an online message board and anyone can subscribe to this free of charge.
www.pullthrunetwork.org The Pull-thru network offers advice, support and information on various defects. These include Cloacal Exstrophy, Imperforate Anus and Tethered Spinal Cord.
www.asbah.org The Association for Spina Bifida and Hydrocephalus. Regional offices in England, Wales and Northern Ireland. A new Continence pack is available which includes information sheets on The Ace Procedure, Artificial Sphincter, Intermittent Self-Catheterisation, Bladder Augmentation and Mitrofanoff. You can also download these information sheets for free on the site. Helpline telephone number 0845 450 7755.
The following links are mainly aimed at adults with the condition. Some parents may find this information useful depending on their child’s needs.
www.uagbi.org Urostomy Association of Great Britain and Ireland. Has a list of branches around the UK and are fully supported by medical professionals from various NHS hospitals who have stoma clinics. Also have regular face to face meetings where adults can share their experiences. Also has links to other support networks. National contact telephone numbers are 0845 2412 159/0870 770 7931
www.colostomyassociation.org.uk The Colostomy Association is a registered charity providing support, reassurance and practical information. Has a list of local branches and holds events and meetings. Offers links to other support groups for children and teenagers who have a colostomy. National telephone helpline numbers are 0800 587 6744/0800 328 4257.
Products
www.astratechuk.com Astra Tech provides catheters for patients who carry out Intermittent Self-Catheterisation. They produce a magazine which you can download from the site. Patients can request free samples of any product before ordering. Free products for children if you request to choose their Select Home Delivery Service. Free gifts & products include a vibrating watch, travel packs, wipes and bags. Freephone helpline number is 0800 783 7027.
www.hollister.com/uk Hollister provides various ranges of continence products. These include catheters, ostomy care and mother and baby care. You can download product catalogues from the site. Free delivery service available. Free samples can be requested before ordering. Freephone helpline number is 0800 521 377.
www.pshealthcare.co.uk A family run British Manufacturing Company providing washable incontinence products for adults and children. Side fastening drop down garments are now available for children who carry out Intermittent Self-Catheterisation. Contact telephone number is 0115 968 1188.
www.continence.co.uk This company offers a unique range of swimwear for children and adults without the restriction of wearing any disposable products. Also offers Hi-Line underwear with a fitted and absorbent pad. You can shop online or contact the Customer care team on 0845 601 8341.
Other related organisations that may help patients and families.
www.lasg.co.uk The Latex Allergy Support group (UK). Contact telephone number 07770 698 192.
www.latexallergyresources.org The American Latex Allergy Association.
www.medicalert.org.uk A registered charity providing a life -saving identification system to protect and save lives. Freephone helpline number 0800 581 420.
www.nextofkin.com An International 24/7 Emergency Service. Lifesaving Medical ID Tags for people with hidden medical conditions or allergies. Also offers other types of life-saving protection which can include the whole family.
www.parentpartnership.org.uk Parent Partnership Services offer information, advice and support for parents of children and young people with special educational needs. Even if you child does not require a statement, they can advise you on how to obtain the correct support in school. Information and advice on the transition move from primary education to high school. Has a search facility to connect you with a service in your area. Main Contact Telephone Number 0207 843 6058.
www.workingfamilies.org.uk Working Families is the UK’s leading work-life balance organisation. Gives parents and carers information on employment rights and campaigns for changes in the law. Provides fee legal advice on employment issues. Includes information for parents of children with disabilities and special needs. Contact Telephone Number 020 7253 7243.
www.benefitsnow.co.uk This site enables parents to understand the full criteria when applying for the Disability Living Allowance on behalf of your child. Also explains to patients who claim this in their own right. Gives step by step guidance on how to complete the forms. You can also asses your situation before applying.
www.familyfund.org.uk The Family Fund is a registered charity covering the whole of the UK and is funded by the National Governments of England, Northern Ireland, Scotland and Wales. They provide grants to families of disabled or ill children. This is means tested against your gross earned income and families should check this before applying. Contact Telephone Number 0845 130 4542.
www.gig.org.uk A National Genetic Interest Group promoting awareness and understanding of Genetic Disorders. Provides links to regional centres in England, Ireland, Scotland and Wales. They now have information leaflets for patients about Genetic Testing and Inheritance Patterns. The information is designed so that patients can prepare themselves for any discussions you may have with a Genetic Specialist. Contact Telephone Number 020 7704 3141.
www.cafamily.org.uk Contact a Family is the only UK wide based charity providing advice, information and support to parents and carers of all disabled children, no matter what their disability or health condition is. They have lots of publications that can be downloaded from the site. Has a list of local National Offices around England, Northern Ireland, Scotland and Wales. Freephone National Helpline for parents 0808 808 3555.
Disclaimer: Bees are not responsible for any information provided by other organisations.