https://officeforrareconditions.org/

Our latest newsletter: https://sway.office.com/ZYVRLipHGMd7vAbz?ref=Link&loc=play

Office for Rare Conditions latest activity update: https://officeforrareconditions.files.wordpress.com/2022/09/ofrc-activity-update-2.pdf

Follow us on social media too! @ORCGlasgow

what are risks of pneumothorax with cough assist?

Thanks Susanne....covered all aspects really well

Brilliant presentation thank you - good luck on Marathon

Thanks Susanne, really interesting

Well done. Very interesrting. Unfortunately I was slightly late in, apologies. Many thanks, Katy - Community S/N

What age would physiotherapy interventions start - would a preterm baby with a muscle disorder need physio input from birth?

thank you for an excellent presentation. Does Muscular Dystrophy UK or other charities provide any resources for the peer groups to help them understand the needs of the individual child or young person with a neuromuscular condition?

Thank you!!!

What would be the average life expectancy be for a young person with SMARD? Thanks, Katy

Una - MDUK has Peer support - on website

for adult management - the slides suggested WoS was looked after by GGC - the last patient I referred from Forth Valley was declined on the grounds they were out of area - they had Friedrich's ataxia so might be different?? for DMDs my understanding is for them too GGC regard as OOA- please let me know if I'm wrong!

Have you had many juvenile DM1 with catoplexy or narcolepsy brought on by stress at school???

Has anyone made a successful business case for a Care Coordinator that has led to a post being funded?

worth asking!!!

Thank you for another excellent event , really informative and relevant

Thank you for 2 fantastic presentations 👏

Thank you for such an informative evening!

Thank you!

Thank you, a really good evening

that was just brilliant - thank you so much

Thankyou all!

Thank you for the opportunity to support your webinar, greatly appreciated. Kind Regards, Sylvia

Ehank you for 2 excellent talks