Rare Disease Research Partners

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.

Our Clinical Trials For All Partners are a vital part of our mission. We are grateful for our newest partnerships and for all partners who have already joined us in spreading awareness of clinical research. https://lnkd.in/gRnnBsjy Please welcome: Rare Disease Research Partners CCRPS Univo IRB Samedan Ltd Realyze Intelligence Healthcare Solutions Mel Mann, MBA, M.Ed Brian Goss #clinicaltrialsforall #clinicaltrials #clinicalresearch

Our Clinical Trial Support Team received fantastic feedback from a clinical trial sponsor recently. Well done and keep up the great work! #clinicaltrialsupport #rarediseases #feedback #greatfeedback #patientfocused #research

The Scottish Medicines Consortium (SMC) has accepted pegungalsidase alfa (Elfabrio®), for the long-term treatment of adults with Fabry disease who are experiencing symptoms and who would usually be offered an enzyme replacement therapy. Read more >>https://buff.ly/3LehvcP

View the results of the Rareminds 2023 Survey 'Rare Minds Matter', exploring the impact of living with a rare condition on mental health here https://buff.ly/3JYRLRa . We are delighted to have partnered with this fantastic organisation to offer an invaluable counselling service to clinical trial participants and their families. Please get in touch with our team at [email protected] for more information #rarediseases #clinicaltrials #counselling

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 >> https://buff.ly/4eEyLWe

We're taking the opportunity on International Neonatal Screening Day to remind everyone of the benefits of this intervention but that more needs to happen for the UK to catch up with other countries. 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: https://buff.ly/4cmKwPB

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: https://buff.ly/45HySw7

Do you have two years’ experience of working with individuals with disabilities within health and social care, education, or related field and would enjoy working as part of a small, dedicated team providing direct support and practical guidance to over 1,500 MPS Society members UK-wide? Then take a closer look at the current vacancies in our Support & Advocacy Team: https://buff.ly/3RxYZjv Prior knowledge of MPS, Fabry and related conditions is not required as in-depth support and training will be provided. We look forward to hearing from you!

Rachel Simpson recently joined our Research and Medical Communications team as a Senior Medical Writer. Welcome to the team Rachel and it is great to have you with us! #research #medicalwriter #communications #rarediseases