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Families Conference

05 May 2017 to 07 May 2017

We are pleased to host a weekend event dedicated entirely to families; this event will take place over the weekend of 5th - 7th May 2017 at the Hilton Hotel in Milton Keynes, starting on Saturday morning, and finishing at 2:30pm on Sunday 7th May 2017.

Delegates are encouraged to join us from 4pm on Friday for registration, check in and socialisation.

For a number of years we have been aware at RPFB, through reports from our own helpline team and our collaborative work with other VI organisations and services, that there is a growing need for us support families who have a child or children, with a diagnosis of RP and other inherited retinal dystrophies and syndromes.

We know there are specific needs and concerns around progressive sight loss due to inherited eye conditions, which require special consideration and attention. In addition, the RP syndromes are often accompanied by additional complications, such as hearing loss.

We hear from families who, all too often, feel alone and isolated by their child’s diagnosis, who don’t know of another family living nearby with the same condition, and have no one to share their concerns about their child’s future with. Some families are hearing terms such as, inherited retinal dystrophy, retinitis pigmentosa, and genetic management for the first time - it can be a frightening and confusing time for them and their family, especially if they can’t readily find the answers to the many immediate questions they may have.

Other families may have a parent who has RP, and are concerned about their children and the prospect of passing on their condition. RP affects the entire family, whether you are the one with the condition or not, and has wide reaching implications. We aim to provide the very best information and emotional support possible.

At RPFB we do not believe that anyone affected by an inherited retinal dystrophy should be left feeling vulnerable and unsupported as they face the challenges these conditions bring, and consequently we decided to develop a new event to meet this need. After consultation we are pleased to be in a position, for the first time ever, to host a weekend event dedicated entirely to families; this event will take place over the weekend of 5th - 7th May 2017 at the Hilton Hotel in Milton Keynes, starting in the afternoon on Friday 5th, and finishing at 2:30pm on Sunday 7th May 2017.

The programme of speakers and the full list of activities for the weekend has yet to be finalised, but below is a brief overview of some of the content you may expect to find included in the weekend.

Plenary sessions:

Research updates
Genetic management / guidance
Family experiences
Life beyond the clinic (after diagnosis, support, education, work and fun, the future)

Breakout sessions:

Leisure activities / sport
Accessible technology
Education (including school, college, university, career choices)
Employment support and access to work
Empowerment and wellbeing

We will be providing crèche facilities during the day for very young children, and older children will have the opportunity to join in activities such as goal ball, and / or go on a trip to Woburn safari park.

Our objective is that by the end of this weekend, we will have an insight into what you, as parents and families, feel are the most important areas and what will benefit you. The feedback from this weekend will drive our priorities and outcomes for the future.

We have chosen a central location, with good road and rail links and, to ensure that no one is excluded from attending due to cost, we have secured funding to cover all expenditure.

Places are limited to 40 families, and although we are not currently taking bookings, we welcome people to register their interest in the weekend, which we hope will be relaxed, informative and fun weekend for all who attend!

To register your interest, please call the office on 01280 821334, or email
sue@rpfightingblindness.org.uk


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