Provides a website resource, on-line discussion forum and telephone support for people affected by
albinism.
Provides support for those affected by
Alström Syndrome, their
carers and professionals working with them. This includes a forum, help with gaining access to
medical assessments with doctors who have expertise in Alström Syndrome, quarterly medical screening clinics and a newsletter.
Aniridia Network provides a positive, supportive network of families, individuals and professionals in order to share ideas, experiences and give emotional support. It provides information to health professionals, patients and their families, about aniridia, the related conditions and their implications for the patient.
BBSUK can help by putting you in touch with other families who are facing similar problems, by passing on
advice which has helped others in the day to day management of thieir
children, and by sending information which will help professionals in
medical and educational fields to understand more about our special children.
Local
support groups in-person and online. For groups in Wales contact Rachel below for more information.
BUS supports patients with
uveitis">Birdshot, particularly when first diagnosed and provides up-to-date information about the condition and treatment options to help empower patients and ensure they have access to the most appropriate treatment possible.
The Cerebral
Visual Impairment Society hold an annual meeting which provides opportunities for parents, people with CVI and professionals to meet up and learn from each other in a mutually supportive environment.
The priority for the Group is to create opportunities to bring families together. If you are interested in attending an event or helping to organise one in your area, follow the link below.
An online community where people can discuss issues related to this condition.
We hold monthly evening group sessions for parents and
carers of
vision impaired children and
young people (0-25 years) which are facilitated by our team of RSBC Family Practitioners. It’s a supportive group where you will learn from the experiences of other parents and carers and in turn be able to support others with your own experiences and stories. Each month there will be a new topic covering many of the milestones and issues which parents and carers might face. It’s a safe place to share your feelings knowing others will support you. What to expect: Peer support; Empowering each other; Learning about and understanding
mental health and well-being; Sharing knowledge and experience; Discussing the challenges of raising a child with a vision impairment; Open
advice forum – no question is too big or too small.
Groups provide parents of
disabled children with essential practical and emotional support. Workshops and other events are organised.
The voluntary groups across Wales are run voluntarily by people living with
diabetes. These groups can offer you local information and support and the opportunity to meet other people who live with diabetes.
An on-line forum where people can discuss any aspect of
dystonia.
Not currently running. Eye Can aims to provide social groups and activities for young
visually impaired people, and to give them specialist support in a wide variety of areas including sight loss, health, education and
training. The project is also providing workshops to local schools and colleges so that they are able to promote the service to their visually impaired students.
The Fuchs' Friends international online
support group is a place of support and information for people with all types of
Corneal Dystrophy. It is an outreach project of The Corneal Dystrophy Foundation. We are here to provide Education and Support regarding Corneal Dystrophies. We are here to help people who, when diagnosed, are sent on an emotional roller coaster ride caused by shock of the diagnoses and fear of the unknown future of their vision.
Glaucoma UK organises patient
support groups across the UK. The concept of the groups is to allow patients to meet their health care professionals in a relaxed atmosphere, away from the time restricted atmosphere on outpatients, so the condition and treatment can be discussed in more depth. The weblink below gives details and contact points.
A on-line discussion forum for
glaucoma patients and their families. The website also includes information about all aspects of glaucoma.
An on-line forum where people with an interest in the condition can raise and discuss issues.
Come and meet other parents of
Visually Impaired children every other Tuesday at 19:30GMT in our free online meet up sessions. (On Mondays from August 2023)
Macular Group meets 4th Wednesday each month at 1pm. Tesco Community Centre, Park Avenue, Aberystwyth.
Support group for people with
macular disease. Meets at Sight Life monthly on the first Monday of the month. 10.30am - 12.30pm. Sight Life, Jones Court, Womanby Street, Cardiff CF10 1BR. Contact Sightlife.
Meets on 3rd Monday in the month at 1.30pm. Hafod y Park, Abergele, Conwy.
Second Thursday of the month, 10.30am at Llandybie Public Memorial Village Hall Llandybie Ammanford.
Second Monday of the month 10.00am at Brecon Town Council Offices (rear entrance), The Guildhall, Brecon, Powys LD3 7AL. Contact Tina.
Bridgend – Third Friday of the month 10.30am at Halo Bridgend Life Centre, Angel St, Bridgend CF31 4AH. Contact Joy.
Third Wednesday of the month at 10.30am at Caerphilly Library, 2, The Twyn, Caerphilly, CF83 1JL, in the reading room. Contact Denise.
Fourth Thursday of the month 10.30am at Yr Atom, 18 Stryd y Brenin, Caerfyrddin SA31 1BH; contact Janice.
Support group for people with
macular disease. Meets on 3rd Wednesday of every month, at 1.30pm. Theatre Fach, Dolgellau, Gwynedd.
Second Wednesday of the month, 2pm, at St Thomas Methodist Church, 7 St Thomas St, Lampeter SA48 7DQ. Contact Diana.
Group meets 4th Thursday each month at 1.30pm. Llanbedr Community Hall, Llanbedr, Gwynedd.
Support group for people with
Macular disease. Meets monthly, on first Monday of the month at 11am. Craig y Don Community Centre, Llandudno.
Third Wednesday of the month 10am at The Lantern Centre Hall Street Church Llanelli SA15 3BB. Contact Adele.
Support group meets 4th Monday of every month at 11am. The Hand Hotel, Llangollen, Denbighshire.
First Thursday of the month, 2pm at Milford Haven Library, Cedar Court, Haven's Head Business Park, Milford Haven, Pembrokeshire. Contact Maddy.
First Thursday of the month, 2pm Wyesham Christian Fellowship, Chapel Close, Wyesham, Monmouth NP25 3NN contact David on 07951 869 586
Neath – Fourth Tuesday of the month, 1pm at Neath Library, Water St, Neath SA11 3EP. Contact Carole.
First Monday of the month at 1pm at the Salvation Army Hall, 1 Hill Street, Kingsway Centre, Newport NP20 1LZ. Contact Caroline.
Support group meets 1st Monday each month at 2pm. MCRA,
Plas Dolerw, Milford Road, Newtown, Powys.
First Wednesday of the month 2pm at The Pavillion, 52 Lanelay Road, Talbot Green, Pontyclun, CF72 8HY contact Julie Parker 07531 498 967
Meet on every 2nd Thursday of the month. 11 am at Canolfan Naylor Leyland Centre, Ruthin.
Last Wednesday of the month at 2pm at St Davids Rugby
Club, Nun Street, St. Davids, Haverfordwest SA62 6BP. Contact Margaret Hughes.
Bi-Monthly (Jan, March, May, July, Sept, Nov) First Thursday of the month 11.30am at the Grand Theatre Conservatory, Singleton St, Swansea SA1 3QJ contact Kate on 01792 401 450
Last Thursday of the month, at 2pm, Community Centre, Augustus Place, Tenby, Wales, SA70 7DJ. Contact Adele.
Meets 1st Tuesday of every month at 11 am. Neuad Pendre, Tywyn, Gwynedd.
Fourth Monday of the month at 10.30am at Welfare Hall, Lesser hall, Brecon Road, Ystradgynlais SA9 1JJ. Contact Cilla.
All Wales telephone calls to help those who are unable to make it to meetings in person. These will take place on: First Wednesday of the Month 11am – 12pm - English and Welsh speaking.
The
Macular Society has local self-help
support groups across the UK. The groups vary in size and style but all offer invaluable practical and emotional support to people with macular disease from people with macular disease. Click the link below and enter your postcode to find the group near you.
Provides information and a range of literature about
Marfan syndrome. Members are also invited to various events organised by the association. There is a range of membership options. The basic 'Friends Membership' (which gives access to the
helpline, all online & social media resources & all standard e-news articles), is free.
VI/
Deaf-blind men of all ages meet every 6 weeks in Wetherspoons Maesteg 2-4pm. Contact Sandy Davies,
Rehabilitation Officer, for forthcoming dates.
If you’re in Year 6 and you want to share your thoughts and chat to others who, like you, will be moving to Year 7 in September, then why not join our Moving on Up Group! As well as the other
young people, our Family Practitioners will be on hand to answer your questions and help you work through the move. This Group will give you the chance to talk about your thoughts and feelings, help you work through them and help boost your confidence before September! The sessions are fun, and enjoyable but they will also offer you a safe space to talk to others and to the RSBC’s Family Practitioner.
The
Nystagmus Network website has a range of information about the condition. However, membership gives additional benefits such as access to experts,
advice, support and discounts on NN publications.
The Peer Support network connects people living with
diabetes, giving the chance to share information, experience and support. It is run by a team of volunteers, each with lots of experience of managing and living with diabetes. You can talk by email at any time, or phone during opening hours.
A virtual group for people affected by
punctate inner choroidopathy (PIC). The group will meet monthly via Zoom, on the first Wednesday of the month at 7pm.
Retina UK volunteers run a number of Local Groups in towns across the UK. The also run an online group for 'Wrexham and Wales'. These enable people with
RP to socialise and support each other as well as raise funds and run events on our behalf.
RNIB's Connect Facebook groups are a supportive space for people affected by sight loss to talk to others in a similar situation about topics that matter to them, ask questions and share tips and stories. The group for Wales is given in the link below.
SANE provides emotional support and information to anyone affected by
mental illness, including families, friends and
carers. Their mental health support services are completely confidential. Whatever your problems or concerns, you will receive non-judgemental emotional support. Their professional staff and trained volunteers have specialist mental health knowledge; they can help you consider options for support that address your individual circumstances.
Held every Tuesday 11.15am to 1.30pm at Jones Court, Womanby Street, Cardiff. Join this group of
visually impaired people of Cardiff and the Vale, for talk and support. Be involved in lively discussions about a wide variety of topics (excluding religion and politics). The group also occasionally enjoys a
trip out for lunch.
The
club meets at Jones Court, Womanby Street, Cardiff on the 3rd Friday of every month fron 10.30am - 12.30pm. Anyone with a sight and hearing impairment are welcome. Volunteers will be on hand to assist if need be.
Provides support for
visually impaired people working in the legal profession, including a student mentoring scheme. They also share information/knowledge about IT solutions to information gathering; accessing printed material and legal material in alternative formats.
The Childhood Eye Cancer Trust (CHECT) is there to help you through the difficult period of diagnosis and treatment of your
child and beyond, offering support throughout their teenage years and into adulthood.
TAVIP is an organisation for all
visually impaired people with an interest in computers, from those using them in schools to professionals working in IT, and for professionals interested in issues related to IT and visual impairment.
A membership organisation for people with
keratoconus. The website has information about the condition, and an on-line discussion forum.
An on-line forum providing information and support to families affected by the condition. Some information is also available to download.
Young SANE is a virtual community that focuses on
mental health for people aged under 25. They want to highlight the issues that are particularly relevant to
young people and talk about their unique needs. Young SANE also celebrates the ingenuity, passion and dedication of young people who have made a commitment to tackling mental health stigma, and changing mental health for good.
