General Activities including networkingTaking samples of boods/DNA, etc for those people who do not attend regional centres Stalls: (Please note that these are all proposals and we need to do some work to see if we can get hold of these people – anybody able to help?)
Fund-raising staffed by Sandra Foot to raise money with her arts and crafts – anybody else want a fund-raising stall?
BUS staffed by Annie and Rea to offer information and advice
Professionals staffed with ophthalmologists and uveitis nurses so that people can ask questions and get adviceExpert patients for advice information and support any of you feel you are expert patients who can advise?
Expert friends, families and carers to provide information and advice. Anyone an expert carer/friend/family member?
Regional stalls – Where we have already set up regional Birdshot networks (e.g. London) – information on those networks and how to join
Information about the National Birdshot Research Network and the Birdshot Biobank
How to take your medication – information on how and when to take your various different medications to make them most effective – a pharmacist – who?
Low vision aids including specialist glasses
Driving with Birdshot information on DVLA requirements and driving options – Lesley F
Registering as partially sighted benefits and disadvantages of registering – who?
ipads and kindles so that people can see whether using these will help them read books, etc – John H
Eye drops Scope Ophthalmics for those people with dry eyes and belpharitis – Rea
Nutrition information on diets and nutrition to keep us healthy – who? Anyone able to help with this?
Supplements information on supplements and what supplements might help and how to take them with your current medication regimes – Nick and Caroline
Cosmetic surgeon who is qualified to advise about whether various procedures can be undertaken while taking our particular medication – who? Anyone able to help?
RNIB – information on services offered – Rea
AGNSS and SCG The specialist government agencies that decide on what medications people with rare diseases should have available to them – Rea
Bates/Alexander and Head massages Lizzie May
Chiropractic – Mikael Petersen looking at your posture and what may help
Complementary approaches – mindfullness, acupuncture, ayurvedic medicine, etc – who?
Vision simulator
RCO Bosu
Optometrists – invite your optometrist
National Voices
The Eye Care Trust
Olivia’s Vision
Vision 2020 (UK) – Mike Brace
Audio Books – where can we get these from?
Susan Piper’s paintings
Plenary Sessions – if we have a couple of small rooms available, there are requests for patients to tell their stories to those who want to hear other people’s stories and for people to talk about self-help |