Rob Burley

Director of Campaigns, Care & Support at Muscular Dystrophy UK and Clore Social Leadership Fellow. All comments are my own.

[Muscular Dystrophy UK @MDUK_News]

Do you happen to know a media and PR whiz? We're thrilled to unveil a fantastic new job opportunity for someone to work alongside our brilliant fundraising team as the Media and PR Manager. Find out more: https://t.co/ILW4kudQXf

[Muscular Dystrophy UK @MDUK_News]

Join us for our in-person information day for adults living with a muscle-wasting or weakening condition in Northern Ireland: https://t.co/x4Uek8xgdt. We will cover a range of topics to help you live well. The event is free but spaces are limited!

[Muscular Dystrophy UK @MDUK_News]

📢 Join us for a focus group discussion on the importance of bone health and osteoporosis in adults with Duchenne muscular dystrophy alongside Dr Jarod Wong, Dr Shima Abdelrahman and @ActionDuchenne. For more information: https://t.co/VvQKwmKnCJ

[Muscular Dystrophy UK @MDUK_News]

Consultations are underway around the closure of staffed ticket offices across the rail network. We know this is causing a lot of concern. Who you need to share your concerns with depends on the rail services you use. Take action at: https://t.co/DUeFpp9pmu

[Rob Burley @RobPBurley]

Really excited to be in Manchester this morning for @MDUK_News to talk to @BBCBreakfast about @ChangingPlaceUK toilets and why their provision is so vital to some of our community

[Rob Burley @RobPBurley]

@Phillyfoxglove @MDUK_Catherine @MDUK_News @UCLIoN @DeciphaCIC Thanks @Phillyfoxglove. Would be great to catch up!

[Rob Burley @RobPBurley]

I’m not the only one from the @MDUK_News team out and about today. We were delighted to be invited to a the @MDSupportCentre open day today and Kyri is there to help mark their 10th anniversary and provide information and support to attendees.

[Muscular Dystrophy UK @MDUK_News]

Thrilled to be joining @MDSupportCentre at their open day and 10th anniversary celebrations. Come and see us at our stand if you're there.

[Rob Burley @RobPBurley]

Really enjoyed being with @h0pefulmummy and members of the @MDUK_News Scottish Council in Glasgow this morning. Lots to think about on the train home and great to spend time with such a passionate part of our community.

[Rob Burley @RobPBurley]

What a fantastic day spent with the MDUK community - listening, talking and learning. An amazing end to a busy week. Very proud of the @MDUK_News team who pulled together and delivered such a great agenda.

[Muscular Dystrophy UK @MDUK_News]

Really excited to be holding our Information Day in London today. Some great sessions coming up led by the MDUK team and very grateful to have some fantastic external speakers as well.

[Rob Burley @RobPBurley]

Another day at #EPAconf and another banner stand… heading to sessions on early access to treatments for rare diseases

[Rob Burley @RobPBurley]

Some great engagement from delegates today on the patient perspective. Interesting discussions about how you can quantify the benefit of treatments to caregivers. This came up in our successful fight for Translarna and looks set to come up with other treatments too.

[Rob Burley @RobPBurley]

Great to have arrived in Amsterdam to give a patient perspective on information about advanced therapies at the World Evidence, Pricing and Access Congress. I’ll be drawing on @MDUK_News experience of being active on 11 treatment appraisals over past 4 years

[Rob Burley @RobPBurley]

@Laura_Burley @MDUK_News Is the view from the hotel any better?

[Rob Burley @RobPBurley]

Great to have arrived in Amsterdam to give a patient perspective on information about advanced therapies at the World Evidence, Pricing and Access Congress. I’ll be drawing on @MDUK_News experience of being active on 11 treatment appraisals over past 4 years

[Muscular Dystrophy UK @MDUK_News]

Looking for financial support during the cost-of-living crisis? For a limited time, we will be offering cost-of-living grants to people living with muscle-wasting conditions. Applications are open from 27 March until 6 April.

Find out more here: https://t.co/pFQjnDX1j6

[Muscular Dystrophy UK @MDUK_News]

Today we’ve been busy typing up a storm to explain muscular dystrophy. Certain social media CEOs, take note... #ElonMusk #HalliThorleifsson @iamharaldur

[Rob Burley @RobPBurley]

Great to be using a venue for the @MDUK_News Information Day in York that has a @ChangingPlaceUK toilet. Thank you for having us @JRHT_FolkHall. Obligatory team Changing Places ‘selfie’…

[Rob Burley @RobPBurley]

Great analogy from Jules Dymond of @WBUadvice that applying for PIP without the right information or support is like trying to write an A Level English essay without knowing what book it’s supposed to be on. Luckily this is something that @MDUK_News can help you with.

[Rob Burley @RobPBurley]

I’m so proud to be part of the @MDUK_News team. Wonderful morning so far with members of our community and great to have so many of the team together in one place!

[Rob Burley @RobPBurley]

I’m so proud to be part of the @MDUK_News team. Wonderful morning so far with members of our community and great to have so many of the team together in one place!

[Muscular Dystrophy UK @MDUK_News]

Our agenda here in York starts at 10am and great to be grabbing a coffee and catching up with old and new friends first!

[Muscular Dystrophy UK @MDUK_News]

Our agenda here in York starts at 10am and great to be grabbing a coffee and catching up with old and new friends first!