Foyle and North West Forum meeting update

The Foyle and NW forum (NIRDP) meeting took place on Saturday 19th May and it was great to welcome old and new faces to the group. There was lively discussion about issues affecting those with rare diseases with particular reference to:

  • Support for carers available via the health and social care trusts
  • Importance of raising the profile of rare disease by telling our stories – thanks to Anita McDowell for allowing her story to be shared via the Derry Journal. Attendees were encouraged to utilise 10,000 more voices initiative to share their patient experience
  • Courses offered by recovery colleges and how to influence their prospectus
  • Challenges associated with travelling outside NI for medical appointments

We look forward to hearing more about the potential for an EDS and associated conditions conference that is being proposed by EDS UK with support from NIRDP.

The group will continue to meet quarterly, next meeting will be planned for September with details to follow.

 

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COUNTING THE COSTS FOR FAMILIES SURVEY:DEADLINE 18TH MAY

Contact: For Families with Disabled Children, is calling on mums, dads and other family members and carers of children and young people with additional needs or disabilities to take part in important research about family finances.

Counting the Costs 2018 is a repeat of their flagship research that has been carried out every two years since 2008. Last time a sharp rise was discovered in the number of families with disabled children going without heating and food. This was leading to too many disabled children and their families suffering ill health. As a result of the research this campaign achieved a number of improvements.

Responses to the survey will give us a unique snapshot of families’ current financial situation a decade on and whether it is getting better or worse.

By filling out the survey you will be helping to raise awareness and campaign for change – particularly as cuts to benefits continue to hit families with disabled children hard.

Contact need as many people as possible to complete the survey to help build a true picture of the current circumstances. This survey should not take more than 15-20 minutes.

The deadline to complete the survey is 18 May 2018. All answers will be treated confidentially.

Need advice on money matters? Get in touch via www.contact.org.uk

To take part in the survey click on the link below:

https://www.surveymonkey.co.uk/r/CountingCosts

 

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PRIORITISING RETENTION IN RANDOMISED TRIALS: CALL FOR PARTICIPATION

PRIORITY II is a research project that aims to identify what effects whether people stay involved in randomised trials. This research is important as trials form vital insight into future healthcare options and opportunities and high drop-out rates can mean that results becoming unreliable or unstable.

The survey aims to collect information from people across the UK and Ireland who are, or have been, involved directly, in designing, running, analysing, or taking part and/or staying involved in randomised trials.

To participate in this important survey click on the link: https://www.surveymonkey.co.uk/r/2GBVMHV

Or, for more information, log on to:
www.trialforge.org/priority-two/

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GRANTS AVAILABLE FROM FAMILY FUND

Family Fund provides grants and other forms of support for families raising disabled or serious ill children and young people (under 18). In 2016/17 the Fund supported over 4,000 local families with grants worth over £1.5 million.

We believe that families facing these challenges should have the same opportunities as others, especially those on low income. We consider all the family’s circumstances and the child or young person’s condition against our eligibility criteria – to ensure we reach and make a difference to the lives of those families most in need of our support.

We can provide grants for essential items such as washing machines, sensory toys, family breaks, bedding, clothing and computers, as we know it can be a struggle financially, emotionally and physically raising a disabled or seriously ill child. Our grants and other support help break down many of the barriers families face, improving their quality of life and easing the additional daily pressures.

All the information on our grants and other support is on our website at www.familyfund.org.uk but if you would like further information on our grants you can email us at info@familyfund.org.uk or call our one of our dedicated grant team on 01904 550055.

If you’d like to join in Family Fund conversations we are on Facebook, Twitter and Instagram.

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EVENT NOTIFICATION: NORTH WEST FORUM, 19TH MAY

Join us for our North West Forum meeting on 19th May at The City Hotel, Derry from 11am-1pm.

All are welcome and is open to anyone affected by rare conditions, including carers and family members, for those interested in finding out more about rare conditions or for those in the health care profession.

For more information contact Sandra Campbell on Sandra@nirdp.org.uk or Tanya Boggs on Tanya@nirdp.org.uk 

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