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Many
thanks to those of you who responded to the survey we posted on our newsletter
before Christmas. We thought we’d share with you some of the feedback so far,
but we’d also welcome more responses to the survey, which can be found here
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- How well did we do on fundraising?
Supporters said they found it easy to give online to our charity and that they
felt suitably thanked for their donation. Mainly their motivation to donate was
because they had direct family experience of genetic conditions themselves.
With one in 25 babies born with a genetic condition, we guess that almost
everyone knows someone who may have a genetic condition, even though they may
not yet be aware of it. Therefore, awareness building alongside good
fundraising is so important. Our Jeans for Genes campaign September 14-20th,
with its focus on schools and workplaces, helps to educate and empower.
- How often would you like to hear from us? We were a bit surprised to hear that supporters would like to hear from us weekly to fortnightly. This is great! We’ll do our best not to disappoint, but we probably need more feedback since we don’t want to run the risk of bombarding people with too many emails!
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We have separately consulted with dozens of patient groups
via our Partnership Network and will be conducting further focus group
discussions with them through February and March in Manchester, Birmingham and
London. If you run a patient group, do get in touch with Danielle for details
as we have a few remaining places – note, this is for charities only, not
individuals.
Email Danielle.singleton@geneticdisordersuk.org
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WHAT DIFERENCE DOES OUR HELPLINE MAKE?
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Hundreds if not thousands of you have contacted our genetic
helpline over the years and now technology makes it easier to monitor the
difference that speaking to a trained genetic counsellor makes. We understand
the anxiety and anguish that a diagnosis makes and sometimes it’s the not
knowing that makes it all seem much worse. |
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We have very recently introduced a short and simple pre and
post helpline survey, that we ask all callers to the helpline to complete – it
only takes two minutes. It is completely anonymous, but over time it helps us
to evaluate the impact that the service makes – using language that prospective
funders understand.
Here’s what we have found in the short time that we’ve set
the survey up:
Before speaking to our genetic counsellor - Most
callers were female aged 40-69, which suggests grannies ringing for reassurance
about a new grandchild, although many were enquiring about their grown-up
child.
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Before speaking
to Emily |
After speaking
to Emily |
| Feel informed
about the condition |
60% disagreed |
60% strongly agreed |
| Feel confused
about the condition |
70% strongly
agreed |
80% disagreed |
| Feel supported
about the condition |
80% strongly
disagreed |
100% agreed |
| Feel anxious
about the condition |
80% strongly
disagreed |
80% agreed |
After the call, 100% said they felt Emily really understood
their questions and concerns and all found their contact with the helpline, useful. All callers receive a follow up email containing advice that has been
covered in the call and links to any local groups. We know that this is important to be able to share advice with anxious family members, in a
clear and informed way.
“(it was) Good to
talk through my patient's condition with the member of staff at GDUK. She
looked into further support for this family. I will definitely phone again on
behalf of other families.” Medical
professional, after speaking to Emily, our genetic helpline.
“It was great to have an
opportunity to discuss my son’s genetic condition and my enquiry re counselling
(genetic) for him with an informed & interested person who could offer
advice and suggestions about how to proceed, I feel more confident about my course
of action after this. “A parent of a
child with a genetic condition.
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SHADOWING EMILY FOR A DAY
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My name is Hava, I recently graduated in Genetics and am hoping to become a genetic counsellor. After contacting Genetic Disorders UK, I was fortunate enough to spend the day shadowing Emily Clarke, who works as their genetic counsellor. |
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While shadowing Emily, we looked at queries sent in by telephone and email from people concerned about family members who had been recently diagnosed with genetic conditions, as well as by people seeking advice on managing long term genetic conditions. We went on
to research any genetic conditions or information we were unfamiliar with and
contacted people ensuring we were providing them with the most accurate and up
to date information.
Working with
Emily offered me a real insight into what being a genetic counsellor involves
and gave me the opportunity to look at real cases they encounter. The
experience has left me with a lot of admiration for the positive impact genetic
counsellors make to people’s lives in the most difficult times and with a
certainty that it’s the career I want to pursue.”
Emily
currently works for GDUK three days a week. All calls to our helpline are
recorded as messages first, so that Emily can research latest news and
recommendations before calling the enquirer back. Similarly, some enquiries
come via our website email system, helpline@geneticdisordersuk.org and are dealt with on a first come
first served basis alongside the voice messages. To leave a message for Emily,
simply call the dedicated line 0800 987 8985. We are currently
fundraising to enable us to have a second genetic counsellor, so that we can offer
a 5- or 6-day service. The helpline is entirely funded through voluntary
donations.
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SAVE THE DATE JEANS FOR GENES DAY 2020 |
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will be held from Monday 14 –
Sunday 20 September. Sign-up at www.jeansforgenes.org and pick a day that is best for you, your workplace or
children’s school. By asking everyone to wear their jeans and make a donation
you can help us provide vital care, equipment and activities. Thank you for
your incredible continued support.
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LONDON MARATHON AND RIDE LONDON
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We are thrilled that all our Marathon
places have been taken this year, so now our team genie is training hard and
we’ll be so grateful to anyone who sponsors a runner or who turns up on the day
to cheer them on! |
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The event is not ours obviously, so spectator info will be up
to date from the organisers here. If you’d like to show your support to one
of our runners, we’ll be sharing profiles of them in the next newsletter along
with their training milestones. For the keen cyclists among you, it’s
not too late to get yourself a place in Ride London. To undertake this challenge, do get in touch
with Doron our Challenge Captain by email doron.kristal@geneticdisordersuk.org
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RARE DISEASE DAY – 29TH FEBRUARY 2020 |
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There are over 300 million
people living with a rare disease worldwide. 72% of rare diseases are
genetic which is why on 29 February, Genetic Disorders UK will be lending its
voice to the EURORDIS Rare Disease campaign and sharing the campaign’s key message
for 2020 that Rare is many
worldwide, rare is strong every day, rare is proud everywhere. There are lots of ideas on how you
can get involved in this year’s campaign and help raise awareness of what it
means to be rare on their website
It's Rare Disease Day on
Saturday 29th February and we have
the perfect resources to help engage children in this valuable
awareness-raising day.
We
have a range of assemblies available to download from the Jeans for Genes website designed to
explain genes and rare disorders to students, using examples to help them
relate genetics to everyday objects.
Along with our assemblies, we
have a range of powerful four
minute films to help pupils understand some of the rare diseases
affecting children today like Cockayne syndrome, hypohidrotic ectodermal
dysplasia and Treacher Collins' syndrome as well as some of the more well-known
conditions like cystic fibrosis, Huntington's disease and sickle cell anaemia.
Plus we have lots of classroom activities so pupils can use their new knowledge.
With free assemblies, teacher's
notes, films and classroom activity sheets, our resources are the perfect tools
to help you kick start your Rare Disease Day this year!
#RareDiseaseDay
As usual, you can also catch up with
our latest news on Facebook and Twitter.
Meanwhile, thanks again for your
support.
All the very
best from the Genetic Disorders UK team. Doron, Laura, Lina, Lisa, Emily, Danielle
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Unsubscribe Privacy Call
us on: 0800 987 8987 Email
us at: hello@geneticdisordersuk.org Write
to us at: Genetic Disorders UK, PO Box 872, Haywards Heath, HP16 1QJ
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