Community support

We have a closed member Facebook group Sussex Ehlers-Danlos Syndromes   

An open Facebook page for interested people or professionals at  EDS/HSD at SEDSHSD 

We’re on Twitter too @SEDSHSD.

Also on Instagram Sussex_EDS

Contact us - admin@infosussexeds.org.uk

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News & events

Meetings 

Above is a picture of our September 2019 Horsham support meeting with a few of our members brave enough to be in camera.​​​​​ We also have informal coffee meetings throughout the year in various parts of Sussex and sometimes link up with the charity EDS UK Support meetings and for joint interest events.

Latest - A successful support meeting was held in Crawley Down on 23rd November jointly with EDS UK Sussex and Surrey. A guest speaker from POTS UK attended and a lively and incredibly helpful discussion was held

Partner organisations and charities

SEDS is working with medical practitioners, clinical commissioning groups, sustainable transformation partnerships, education organisations and transport organisations (including trains, ferries, airports and airlines). We are lucky to have some amazing organisations and charities we either participate or partner with in Sussex and nationally.

Latest - SEDS attended and supported members at Gatwick Accessibility Day 16th November 2019

           - SEDS attended Healthwatch event 18th November in East Grinstead

Events

 

SEDS and board members are often recognised and rewarded for their activity in Sussex supporting people with EDS. This could be by building awareness, by working with official bodies to improve the care pathway, by supporting members in continuing to live fulfilled and varied lives, or simply by being there as support.

Latest- BBC Sussex Community Heroes Awards, Our Chair Jane Green  was runner up in the Carer category for the support of people with EDS.

Listen to the awards as the ceremony will be aired on BBC Sussex FM/Online/DAB on Sunday, 6 December at 17:00 GMT, Christmas Day at 18:00 GMT and on Friday, 1 January at 18:00 GMT.

 

Fundraising

To SEDS continue to provide positive support and activities we do events, apply for grants and register for local funding opportunities. These various  funding opportunities help the wider community support the positive work SEDS does.

Latest - SEDS delighted to receive a £500 donation from Sussex Police Property act fund

           - Curry and Quiz night held 9th November in East Grinstead raised  over £600 for SEDS 

           -We received a Magic Little Grant through the partnership between Localgiving and the Postcode Community Trust.  The Postcode Community Trust is a grant-giving charity funded entirely by players of People’s  Postcode Lottery.  Localgiving is the UK’s leading membership and support network for local charities and community groups. Our group received £500 to help support our members

 

 

 

 

 

 

 

 

Activities

Exciting news is that our activities are rolled out locally. Have a look under Activities page

Latest - Festive offer for our Sussex Ehlers Danlos Syndromes facebook members on funding of activities join our facebook  group for more information.

Upcoming Events
Sussex EDS/HSD First Aid Training
Drama Hut, Warden Park Academy