Calling all healthcare professionals, researchers & patient organisation representatives working in rare conditions! We are delighted to announce that Rare @ Manchester 2024 (2nd MRCC Annual Event) will be held on Wed 17th July. To register, check out our poster below! MFT NHS

For #MPSAwarenessWeek, learn more about MPS II Hunter. #research #rarediseases

Our aim with the pocket knowledge series is to increase awareness surrounding rare diseases. In this particular installment, we focus on MPS III (Sanfilippo), a rare autosomal recessive condition. #MPSAwarenessWeek #rarediseases #research

Read the patient reported experience after the first two years on an English managed access agreement. View the full poster buff.ly/3Urnyiy #MPSAwarenessWeek #rarediseases #research

View the results of this European survey, using a specifically designed questionnaire to understand the pathway to diagnosis and burden of illness of MPS VII here buff.ly/3wpbXIX #MPSAwarenessWeek #research #rarediseases

View our poster examining the early signs and symptoms noted in children subsequently diagnosed with MPS disorders here buff.ly/3LSWYLP #MPSAwarenessWeek #research #rarediseases

As #MPSAwarenessWeek comes to a close, we are touched by the heartfelt words shared by the father of an MPS IIIA patient who has received support from our team. To learn more about the MPS conditions, please visit buff.ly/3ya4DkS #research #rarediseases

The RDRP office will be closed on Monday 27th May for a UK Bank Holiday. Our Clinical Trial Support Team will still be available to assist with trial logistics related emergencies during this time.

New online resource available! Head to our website and download this recently published information booklet on MPS III Sanfilippo with an easy-to-understand overview of the condition and further insight on how we can help you live well with MPS III >> buff.ly/3wSX3L4

Our 2023 Impact Report is available now. Showcasing our biggest successes from last year and the wonderful fundraisers and volunteers who helped us to achieve them. Read it here: buff.ly/45HySw7

We're taking the opportunity on International Neonatal Screening Day that there are conditions with treatments that could save lives if identified early enough. Join The Newborn Screening Collaborative in making progress happen. Watch and share: buff.ly/4cmKwPB

Hear from our trustee Dr Fiona Stewart as she reflects on a busy past six months of CSAC (Clinical Scientific Advisory Committee) achievements and looks ahead to an exciting autumn >> buff.ly/4eEyLWe

View the results of the Rareminds 2023 Survey 'Rare Minds Matter', exploring the impact of living with a rare condition on mental health here buff.ly/3JYRLRa We are delighted to have partnered with this fantastic organisation #rarediseases #clinicaltrials #counselling

Our Clinical Trial Support Team recently received outstanding feedback from a clinical trial sponsor. Great job, team! Keep up the excellent work! #ClinicalTrialSupport #RareDiseases #Feedback #PositiveFeedback #PatientFocused #Research

Our office will be closed on Monday 25th August due to the Bank Holiday in the UK. If you require immediate assistance from our Clinical Trial Support Team, that cannot wait until the office reopens, please contact us using the numbers provided below.

Discover how our Clinical Trial Support Team provided invaluable assistance to a patient who emigrated during their participation in the clinical trial. Read our case study for more details buff.ly/3z2phV0 #clinicaltrials #clinicaltrialsupport #rarediseases #research

We're proud of the work our Clinical Trial Support Team does, and it's rewarding to hear about the positive impact they've had on patients. We recently received excellent feedback from a family in the US. #clinicaltrialsupport #clinicaltrials #rarediseases #research

Participating in a clinical trial can be a daunting experience, especially when language barriers are involved. How did our team provide assistance to a family who did not speak the language of the country where the trial takes place? Read our Case Study buff.ly/49XZ6vZ

How did our Clinical Trial Support Team act quickly to ensure patients could continue attending their study visits despite travel restrictions during the COVID-19 pandemic? Discover the details in our case study here buff.ly/3RecMdO #clinicaltrials #rarediseases

It was an absolute pleasure for Bob Stevens, Group CEO of @mpssocietyuk and RDRP, and Bennie Marshall-Andrew, Head of the Clinical Trial Support Team, to catch up with some of the Sangamo UK team last week.