It was Rare Disease Day on 28th February! We were in the atrium of the Royal Hospital for Children all week! It was great to talk to so many people and raise awareness for patients and families with rare conditions!

Did you know you can access the recordings from our previous webinars on our website! Just follow this link:
https://officeforrareconditions.org/glasgow-webinar-series-in-rare-conditions/

Registration is now open for the next webinar in our series: The Patient Passport or Care Summary for those affected by Rare Conditions!  Wednesday 27th April 2022. We have some fantastic speakers lined up! See the programme and how to register here: https://officeforrareconditions.org/patient-passport-webinar/

Have you or your child been diagnosed with a rare condition?

Are you looking for further support or want to speak to someone who is going through the same experience?

Read our welcome letter to the Office for Rare Conditions 'A Warm Hug' by scanning the QR code or following this link.

2021 Funding 

We are delighted to announce the two projects that have been awarded funding from the 2021 call out: 

Small Project Grant awarded to: 
Dr Frederick Ho: 'Child maltreatment and later life telomere length: A population cohort study'.

Ms Ramla Omar: 'Proteomic analysis to unlock mechanisms underlying childhood intracerebral haemorrhage'.

The 14^th Congress of the European Paediatric Neurology Society (EPNS) is taking place on 28 April – 2 May 2022. 

The Office for Rare Conditions will help run the coffee sessions on Saturday 30th April-Sunday 1st May. The coffee sessions are hosted by patient organisations to give the opportunity for patients to hear from experts and specialists in each of their fields. 

The patient organisations hosting the coffee sessions include:

• International Headache Society
• The Brain Charity 
• Ring20 Research and Support UK
• Dravet Syndrome UK
• Epilepsy Research UK 
• Sydenham's Chorea Association

You can also catch the Office for Rare Conditions information stand at the International Congenital Diaphragmatic Hernia Symposium, 27-29th April 2022!

For more information about the conference and to see the programme, follow this link: https://www.cdh2022.com/

The Office for Rare Conditions is delighted to announce the recent publication of the results of our PREMs survey: 'Experience of health care at a reference centre as reported by patients and parents of children with rare conditions', Orphanet J Rare Dis, 16, 65 (2021). 

We are still collecting responses to our survey. So if know someone who can complete the survey or would like to complete it yourself then please click here.

See these Share & learn sessions for carers from Carers Scotland! To register, please click on the links below. After registering, you will receive a confirmation email containing information about joining the meeting:

•  12 April at 10AM Share and Learn – Legal Services Agency on Power of Attorney and guardianship 
• 14 April at 3PM Share and Learn – Stretch Body Mind with Victoria (simple movement, breathing and meditation techniques to help you cope with the stresses of being a carer)
• 19 April at 10AM Care for a Cuppa Chat 
• 26 April at 10AM Care for a Cuppa chat

Good Diagnosis

Genetic Alliance UK have launched their new report 'Good Diagnosis: Improving the experience of diagnosis for people with rare conditions'. The report identifies key principles of a good diagnosis and makes recommendations to improve the experience of diagnosis.

You can read the full report here.

Rare Disease Day

Rare Disease UK were delighted so many people and organisations took part in this year's Rare Disease Day events!

You can see our Rare Disease Day 2022 Highlights and our 'Shining a light on rare conditions' programme in partnership with ITN Industry News, on the Rare Disease UK website

Rare Resources Information Day

Join Genetic Alliance UK for an informal virtual information day on Wednesday 30 March 2022.

Register here to sign up for this 'drop in' event where you can find out more about information and support services in Scotland for people living with rare, genetic and undiagnosed conditions.