Office for Rare Conditions Glasgow

Office for Rare Conditions Glasgow

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#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.

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.

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.

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!

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

link.webropolsurveys.com

Registration is now open for the 4th annual study day for Early Management of Rare Conditions in the Neonate on Monday 17th August 9am-4.15pm. This event is aimed at healthcare professionals. It costs £10 to join all the talks on the day and have access to them for 6 months after. If you would like to register then please follow this link: https://www.glasgowchildrenshospitalcharity.org/support-us/events/235-office-for-rare-conditions-neonatal-study-day-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! 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: 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

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 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!

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

download2.eurordis.org

surveys.publichealthscotland.scot

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.

surveys.publichealthscotland.scot 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.

gov.scot

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.

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

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

roalddahl.com

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!

roalddahl.com This website uses cookies. You can find a list of the cookies we use and what we use them for here, where you will also find information about how to change your cookie settings at any time. Otherwise we'll assume you're OK to continue.

!!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

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

bbc.co.uk

Get Well Soon - Coronavirus

bbc.co.uk Dr Ranj explains the coronavirus to Jobi.

youtube.com

Physio and Occupational Therapy - activities, skills and exercises - YouTube

youtube.com

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

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

Brittle Bone Society

** Brittle Bone Society Medical Advisory Board Q&A Session on Covid19 - 9th April @ 3PM ** If you have something you want to ask, submit it here: https://form.jotform.com/200923088301043

www.rarechromo.org

Check out Unique’s guide for families, containing lots of Covid-19 related information, guidance, ideas, resources and sources of help. Includes education, health, therapies, activites and much more.
https://www.rarechromo.org/media/familyguides/English/Self-isolation%20FTNW.pdf

rarechromo.org

The Complex Bone Service at the Royal Hospital for Children in Glasgow has asked us to share this guidance on COVID-19 for people who have achondroplasia.

Please read the information below for the latest NHS GGC hospital visitor restrictions or visit https://www.nhsggc.org.uk/your-health/health-issues/covid-19-coronavirus/for-the-public/hospital-visiting-restrictions-now-in-place/

Join in the Clap For Our Carers! Tonight at 8pm the UK will join together and applaud all our brave NHS workers for their ongoing efforts to fight against the COVID-19 virus. So join us from your window, front door or living room to show your appreciation to those taking care of the most vulnerable #clapforourcarers

rarediseases.org

Home - NORD (National Organization for Rare Disorders)

Free Upcoming Webinar from NORD for patients & families:
A Rare Response: Addressing the COVID-19 Pandemic
https://globalmeetwebinar.webcasts.com/starthere.jsp?ei=1295204&tp_key=d5177bab96&sti=email_campaign

rarediseases.org

Please see the update below from the British Society of Genetic Medicine about the COVID-19 virus and patients with rare or undiagnosed genetic conditions. Children seem to be more mildly affected than adults but those with respiratory issues are at higher risk so it is key to follow governmental rules by staying home; only leaving to buy essential food supplies, for exercise once a day and for medical treatment or care.

Contact - For families with disabled children

We have published new information on changes to the benefits system in response to the current outbreak.

Covering Universal Credit, Statutory Sick Pay and new style Employment and Support Allowance.

We will keep this page updated as things change.

https://contact.org.uk/advice-and-support/benefits-financial-help/benefits-and-tax-credits/coronavirus-and-welfare-benefits/

nhsinform.scot

Coronavirus (COVID-19) in Scotland | NHS inform

For the latest guidance about COVID-19 from NHS Scotland & the Scottish Government https://www.nhsinform.scot/coronavirus

nhsinform.scot Latest guidance about COVID-19 from NHS Scotland and the Scottish Government, including social distancing and stay at home advice.

Glasgow Children's Hospital Charity

At this difficult time, if you can, please remember Glasgow Children's Hospital Charity and the work they do to support all children and families coping with health conditions.

Our families are at the heart of all that we do during these worrying times.

Kirsten Sinclair, our Chief Operating Officer, shared this message for our family of supporters, donors and volunteers - because we need you more than ever 💜

Your donations can help to ensure that our play programme, emergency support fund and financial advisors can all continue to support children and families in hospital at this time.

Please consider donating today at https://www.glasgowchildrenshospitalcharity.org/donate

independent.co.uk

How to manage your mental health if you self-isolate during coronavirus

Some useful tips to help manage anxiety

As the government announces further social distancing measures, how should people maintain good mental health in long periods of self-isolation?

metro.co.uk

Teachers and tutors give their tips on how to educate your kids at home

Take a look at this article for tips from teachers and tutors on how to educate your kids from home during the COVID-19 school closures. It also has nice links to online education resources: https://metro.co.uk/2020/03/20/teachers-tutors-give-tips-educate-kids-home-coronavirus-school-closures-12425979/

We hope you and you families are keeping well and safe. Please remember if you have any worries or questions, then don't hesitate to get in contact with us at [email protected]. We are happy to help!

metro.co.uk Schools close from this afternoon.

[03/20/20]   ***GP Out of Hours Service***
Due to the current risk posed by the COVID-19 outbreak, you must call before attending your GP OOH service as they will not see you if you turn up unexpectedly. If you feel unwell outwith normal surgery hours call NHS24 on 111. They will advise on the best course of action and arrange for you to see a GP if required.

share4rare.org

S4R Registration | Share4Rare

Share4Rare are an organisation who want to build a community to gather patients, carers, clinicians and researchers to join forces and make a difference in rare diseases.

They are going to conduct a number of different studies to improve the research into rare and undiagnosed conditions.

Here is the link to their study for undiagnosed patients:

The burden of searching for a diagnosis in non-diagnosed patients from a holistic perspective. https://www.share4rare.org/registration/undiagnosed-burden

share4rare.org

[03/19/20]   A message from the Office:

We hope everyone is doing well and keeping safe. Just to let everyone know, we are keeping the office going but working from home. We will keep this page updated with any developments from the NHS or Government.

We understand this is a confusing and stressful time so if you have any concerns or worries then feel free to contact us via email: [email protected]

Best Wishes

The Office for Rare Conditions Team

samh.org.uk

Coronavirus and your mental wellbeing | SAMH

SAMH have put together a new web page offering support and information to anyone who is feeling anxious right now.
https://bbox.blackbaudhosting.com/webforms/linkredirect?url=http%3a%2f%2fwww.samh.org.uk%2fcoronavirus&srcid=19992083&srctid=1&erid=1410357166&trid=3acb4607-1dc2-42b5-9f04-6612bd6f1e0b&linkid=210495459&isbbox=1

samh.org.uk SAMH is the Scottish Association for Mental Health.

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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
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