Office for Rare Conditions Glasgow

Office for Rare Conditions Glasgow The Office for Rare Conditions, based at the Children's Hospital and the Queen Elizabeth University Hospital in Glasgow, aims to raise awareness of rare conditions, enhance the quality of care provided and promote participation in multi-centre research.
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The Office for Rare Conditions, based at the Royal Hospital for Children and the University of Glasgow, aims to promote the awareness and management of rare health conditions in children.

Operating as usual

Last chance to register for our Zoom meeting tomorrow! Please email shannon.mullen@glasgow.ac.uk and a link will be send...
16/09/2020

Last chance to register for our Zoom meeting tomorrow! Please email [email protected] and a link will be send to you 24hrs before the meeting!

See below for the agenda for the next Office for Rare Conditions zoom meeting this Thursday 17th September 2020 at 7pm! If you are interested in attending, please email [email protected]. We hope to see you on Thursday!

See below for the agenda for the next Office for Rare Conditions zoom meeting this Thursday 17th September 2020 at 7pm! ...
15/09/2020

See below for the agenda for the next Office for Rare Conditions zoom meeting this Thursday 17th September 2020 at 7pm! If you are interested in attending, please email [email protected]. We hope to see you on Thursday!

Genetic Alliance UK’s Covid-19 Information Hub https://covid-19.geneticalliance.org.uk/ Covid-19 has created numerous ch...
14/09/2020

Genetic Alliance UK’s Covid-19 Information Hub
https://covid-19.geneticalliance.org.uk/

Covid-19 has created numerous challenges for everyone affected by genetic, rare and undiagnosed conditions – both the people directly affected and the organisations who support them. In response, Genetic Alliance UK have set up a Covid-19 Information Hub to support the UK’s genetic, rare and undiagnosed community during the Covid-19 pandemic. It provides quick and easy access to relevant information and will be updated regularly while Covid-19 remains a threat to health.
The Covid-19 information hub also contains Scotland-specific information and is updated regularly with key pieces of information and guidance for Scotland.
Genetic Alliance UK’s Policy and Engagement Manager for Scotland has been in regular correspondence with Scottish Government to provide feedback and recommendations on Covid-19 policy on behalf of the rare, genetic and undiagnosed community. If you wish to share your views, please contact [email protected]

!Save the date! The Office for Rare Conditions is having the next information zoom meeting on Thursday 17th September 20...
08/09/2020

!Save the date! The Office for Rare Conditions is having the next information zoom meeting on Thursday 17th September 2020 at 7pm. We will be reporting on our survey results and discussing the restructuring of the Patient Advisory Group. If you are interested in attending then please email [email protected] to register.

A massive thank you to everyone who joined our education day on 'Early Management of Rare Conditions in the Neonate'. We...
31/08/2020

A massive thank you to everyone who joined our education day on 'Early Management of Rare Conditions in the Neonate'. We hoped you all enjoyed the day! A big shout out to all our speakers who gave absolutely fantastic talks, many thanks!

Calendar Photography Competition – Glimmer of Hope!'Glimmer of Hope' is an opportunity to visually express the hope that...
27/08/2020

Calendar Photography Competition – Glimmer of Hope!
'Glimmer of Hope' is an opportunity to visually express the hope that exists for people with rare diseases.

Winning entries will be used to create a calendar that will raise awareness of rare diseases and the strength that is shared within our community

"HEREDITY"  A DOCUMENTARY WHICH EXPLORES THE DYNAMICS OF LIVING WITH A RARE CONDITION FROM THE PERSPECTIVE OF SIX LONDON...
20/08/2020
Hereditary | A short documentary

"HEREDITY" A DOCUMENTARY WHICH EXPLORES THE DYNAMICS OF LIVING WITH A RARE CONDITION FROM THE PERSPECTIVE OF SIX LONDONERS

https://vimeo.com/447779044

We gain an insight into the dynamics of living with a hereditary condition from the perspective of six Londoners. Directed, filmed and edited by Yemisi Bokinni Featuring:…

Last chance to register for our Zoom Webinar Study Day on Early Management of Rare Conditions in the Neonate- Monday 17t...
10/08/2020

Last chance to register for our Zoom Webinar Study Day on Early Management of Rare Conditions in the Neonate- Monday 17th August!

We have some excellent talks lined up! Take a look at the programme:https://officeforrareconditions.files.wordpress.com/2020/08/early-management-neonate-programme-august-2020-1.pdf

Registration is still open so follow the link below to sign up to the Zoom Webinar and access to talks for 6 months after! https://www.glasgowchildrenshospitalcharity.org/support-us/events/235-office-for-rare-conditions-neonatal-study-day-2020

SAMH have released a survey looking into how the coronavirus pandemic has affected those aged 16+, who live in Scotland ...
06/08/2020
Coronavirus and mental health research | SAMH

SAMH have released a survey looking into how the coronavirus pandemic has affected those aged 16+, who live in Scotland and receive mental health support.

It only takes 15 minutes to complete. Here is the link: https://www.samh.org.uk/about-mental-health/self-help-and-wellbeing/coronavirus-information-hub/coronavirus-and-mental-health-support-research?bblinkid=237352095&bbemailid=23568245&bbejrid=1598958681

SAMH is the Scottish Association for Mental Health.

24/07/2020
Survey powered by Webropol

Genetic Alliance UK have published 'The Rare Reality of COVID-19' where they have assessed the impact that the pandemic has had on those living with rare and undiagnosed conditions in the UK. Check out their website page to see their report: https://covid-19.geneticalliance.org.uk/news/the-rare-reality-of-covid-19/

The Office for Rare Conditions has also put together a COVID-19 Survey. We want to look at the local impact of the pandemic in Glasgow on those living with rare and undiagnosed conditions. So if you haven't already please could you spare a couple of minutes to fill out our survey: https://link.webropolsurveys.com/S/4E5BADED25FC1DF7

An Update from NHS GGCGood news at the Teddy Hospital:Registered Health Play Specialist Jane Craig, at Glasgow's Royal H...
23/07/2020

An Update from NHS GGC
Good news at the Teddy Hospital:
Registered Health Play Specialist Jane Craig, at Glasgow's Royal Hospital for Children, has been nominated an award by the Healthcare Play Specialist Education Trust.

Health Play is a role dedicated to supporting children and young people at the Royal Hospital for Children. Play is used to help children understand their condition and aims to reduce anxiety and worry around hospital treatment.

Jane has often been incredible at our family events so we want to say a huge well done and thank you!

The Glasgow Children's Hospital Charity are offering grants of up to £60 for children with rare conditions who have been...
22/07/2020

The Glasgow Children's Hospital Charity are offering grants of up to £60 for children with rare conditions who have been adversely affected by the COVID-19 pandemic. The grant could be for anything that would help make life in lockdown a little easier (e.g sensory toys). For more information please contact [email protected]

16/07/2020
Help us ensure the right to Carer's Leave by responding to consultation and survey

Help Carers UK respond to the governments consultation to give unpaid carers new rights to take a weeks annual leave.

See the link below to their newsletter which contains a link submit an individual response to the consultation and a survey to complete:
https://carersuk-news.org/74C-6YAK0-9DEBDD2ABDED883015WMAT66817B68F1B97239/cr.aspx

Please respond to Government consultation, and complete our survey, to ensure working carers have a new right to take carer's leave

The Office for Rare Conditions has received funding from the Glasgow Children's Hospital Charity for another year! We ar...
14/07/2020

The Office for Rare Conditions has received funding from the Glasgow Children's Hospital Charity for another year! We are very excited to continue the activities of the office! Thank you to everyone for their continued support!

13/07/2020
Survey powered by Webropol

If you have a few minutes to spare, why not complete our COVID-19 Survey?
The purpose of this survey is to identify the specific needs of people affected by rare, unusual, and undiagnosed conditions in relation to the COVID-19 pandemic. We want to hear and listen to your experiences during this pandemic so we can propose practical solutions to ensure your needs are taken into account.
Here is the link to the survey: https://link.webropolsurveys.com/S/4E5BADED25FC1DF7

We want to say a massive thank you to everyone who joined our Zoom meeting last night. We really enjoyed seeing everyone...
10/07/2020

We want to say a massive thank you to everyone who joined our Zoom meeting last night. We really enjoyed seeing everyone and had some great discussions! A special thanks to our fantastic speakers: Natalie from Genetic Alliance, Susan from CONTACT and Salena from Family Fund!

Please see the announcement below! We would love to see as many people as possible to join our meeting tomorrow at 7pm! ...
08/07/2020

Please see the announcement below! We would love to see as many people as possible to join our meeting tomorrow at 7pm! There is no pressure to join in the discussions if you would just like to come along and listen to the talks! If you would be interested in joining then please email [email protected].

Hope to see you on Thursday!

Please see our agenda for zoom meeting on Thursday (9th)! We are very excited to hear from three amazing charities: Genetic Alliance UK, Family Fund and CONTACT. If you would like to join too then please email [email protected] to register your interest!

Please see our agenda for zoom meeting on Thursday (9th)! We are very excited to hear from three amazing charities: Gene...
06/07/2020

Please see our agenda for zoom meeting on Thursday (9th)! We are very excited to hear from three amazing charities: Genetic Alliance UK, Family Fund and CONTACT. If you would like to join too then please email [email protected] to register your interest!

Rare Revolution Magazine
03/07/2020

Rare Revolution Magazine

Today in the UK it is National Bereaved Parents Day (3 July) this is to raise awareness for all parents who have lost a child of any age, under any circumstance. The organisation A Child Of Mine - Supporting Bereaved Parents is asking people to light a candle at 7pm today and show bereaved parents in the community that they are not alone.

To anyone who has ever lost a child we are sharing this for you and pausing to take a moment to remember these precious loved ones.

Listening to our community we know that talking about bereavement is a difficult conversation to have and sadly when people have lost loved ones, others have not always known what to say, or how best to demonstrate their compassion which often means they avoid the conversation all together.

We would like to reach out to anyone who has been through such a bereavement and ask them: what do you wish people would have said or done to offer you support? This will help us to run a future feature and guide from our RARE community to advocate for bereaved parents and support others with the right ways to show you they care. Please get in touch with Catherine [email protected]

We are having a Zoom meeting! Join us on Thursday 9th July at 7pm! We will be joined by three fantastic charities CONTAC...
03/07/2020

We are having a Zoom meeting! Join us on Thursday 9th July at 7pm! We will be joined by three fantastic charities CONTACT, Family Fund and Genetic Alliance UK who will be giving short talks and will happily answer any questions you may have. If you would like to join us please email [email protected] and a link will be sent to you 24 hours before. Hope to see lots of you there!

18/06/2020
download2.eurordis.org

EURORDIS have published a document with advice on how to protect people living with a rare disease as lockdown measures are being lifted. A very interesting and informative read so take a look:https://download2.eurordis.org/pressreleases/EURORDISstatement_How-to-protect-people-with-rare-disease.pdf

COVID-19 – Shielding Impact and Experience Survey – Scotland. A new survey capturing the views and experiences of people...
11/06/2020
COVID-19 – Shielding Impact and Experience Survey – Scotland

COVID-19 – Shielding Impact and Experience Survey – Scotland.

A new survey capturing the views and experiences of people who are shielding has been launched by Public Health Scotland.

The survey is targeted at people who have received a letter from Scotland’s Chief Medical Officer advising them to shield or for carers to complete on their behalf. The survey covers questions around attitudes and beliefs around shielding, shielding behaviour, the support people are receiving and the impacts that shielding is having on people’s lives.

Here is the link to the survey: https://surveys.publichealthscotland.scot/shielding

It takes about 15 minutes and is open until Sunday 14th June 2020.

Shielding is for people, including children, who are at very high risk of severe illness from coronavirus (COVID-19). Shielding is a measure to protect those people from coming into contact with COVID-19, by minimising all interaction between them and others.

The Scottish government have published a policy document outlining their update on the future direction of shielding pol...
10/06/2020
Coronavirus (COVID-19): Shielding - A Way Forward for Scotland - gov.scot

The Scottish government have published a policy document outlining their update on the future direction of shielding policy in Scotland. Give it a read here: https://www.gov.scot/publications/coronavirus-covid-19-shielding-way-forward-scotland/

They have extended the shielding advice to 31st July 2020 but have also said that if infection rates are low enough, those shielding will be able to go outside for exercise from 18th June 2020.

An update on the future direction of shielding policy in scotland.

Today is Batten Disease Awareness Day! Please take a moment to look at the Batten Disease Family Associations page/websi...
09/06/2020
Batten Disease Family Association

Today is Batten Disease Awareness Day! Please take a moment to look at the Batten Disease Family Associations page/website: http://www.bdfa-uk.org.uk/
They aim to help support families, facilitate research and raise awareness for those with Batten Disease. #battenday2020

TOMORROW IS AWARENESS DAY! 🧡 Boris and the BDFA team are still up working hard ready for tomorrow’s events 🧡 Don’t forget to share what you are up too on social media and tag us on in it, let’s turn social media orange! #bdfa_battendiseaseuk #battenday2020 #battendisease #bdfa

Be sure to check out the Roald Dahl website: https://www.roalddahl.com/charity/get-involved/things-to-do-with-your-kids/...
08/06/2020
www.roalddahl.com

Be sure to check out the Roald Dahl website: https://www.roalddahl.com/charity/get-involved/things-to-do-with-your-kids/quentin-blake-colouring-in-sheets
World famous illustrator, Sir Quentin Blake, has designed some colouring in sheets available to download and print off. They also have a page on 'Things to do indoors' with lots of fun activities for the whole family!

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!!NEWS UPDATE!!We are sorry for the lack of posts recently, we were on furlough, but the Office for Rare Conditions is b...
02/06/2020

!!NEWS UPDATE!!
We are sorry for the lack of posts recently, we were on furlough, but the Office for Rare Conditions is back and we are excited to get things up and running again!
Our email address ([email protected]) is being monitored so please get in touch if you have any questions or are looking for support during these uncertain times. We hope everyone is staying well and safe and we would love to hear how you've been getting on!

The ORC Team

Contact - For families with disabled children
30/04/2020

Contact - For families with disabled children

You may have seen reports in the news about multi-system inflammatory disease in children with a possible connection to the Covid-19 coronavirus.

We wanted to reassure you that specialist bodies such as the Paediatric Intensive Care Society have highlighted that serious illness as a result of Covid-19 still appears to be very rare in children.

If your child is unwell or has the symptoms of sepsis then please seek medical attention in the usual way as set out in guidance from the Royal College of Paediatrics and Child Health:

http://ow.ly/gmUs50zqTi3

Royal College of Paediatrics and Child Health
17/04/2020

Royal College of Paediatrics and Child Health

In case you missed it: our poster with advice for parents and carers during the COVID-19 outbreak 👇

KIDS - Kids Independently Developing Skills
06/04/2020

KIDS - Kids Independently Developing Skills

Speech and Language Therapy have provided the following advice for Parents & Guardians during COVID-19

Address

Office For Rare Conditions, Zone 1, Office Block, RHC & QEUH Campus, 1345 Govan Road
Glasgow
G51 4TF

Opening Hours

Monday 08:30 - 16:30
Tuesday 09:00 - 17:00
Wednesday 08:30 - 16:30
Thursday 08:30 - 16:30
Friday 08:30 - 16:30

Telephone

0141 451 5899

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Comments

#ShowYourRare
🎄save the date🎄 Tickets available soon Join us in some family festive fun!
CS TTD family Amy and Friends Annual Conference
Some may be aware of this, I have just recently found out about it 🌻
Sharing on behalf of a friend and her family living with batten. Take some time to relax, raise awareness, funds and more importantly hear their story from the girls gran 💞💞 https://m.facebook.com/story.php?story_fbid=1046615008876791&id=565075570364073
Have a look at this website you may find an exhibition near you.
At a recent Rare and undaignosed cross party group the topic of insurance came up. I thought I would share some information with you. genetic Alliance have very good information https://www.geneticalliance.org.uk/our-work/living-and-education/insurance-and-genomics-now/ The TSSS have worked with a company called http://www.specialrisksbureau.co.uk/health-conditions/turner-syndrome who cover many conditions they have links with a travel insurance company too. We are not recommending any specific company just sharing so that you can do research. Please share if you find useful.