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.
Rare Disease Research Partners
Research Services
Supporting research and access to treatment for people living with rare conditions
About us
Rare Disease Research Partners support research and access to treatment for people living with rare conditions
- Website
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https://rd-rp.com/
External link for Rare Disease Research Partners
- Industry
- Research Services
- Company size
- 11-50 employees
- Headquarters
- Amersham
- Type
- Nonprofit
Locations
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Primary
Amersham, GB
Employees at Rare Disease Research Partners
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Neera Gupta
Senior Finance Officer at Rare Disease Research Partners
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Bob Stevens
Group CEO, MPS Society & Rare Disease Research Partners Vice Chair, LSD Collaborative Co-Chair, International MPS Network
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Samantha Wiseman
Senior Research Associate & Managed Access Lead at Rare Disease Research Partners
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Marnie Ross
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Updates
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Rare Disease Research Partners reposted this
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
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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
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Rare Disease Research Partners reposted this
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
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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
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Rare Disease Research Partners reposted this
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
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Rare Disease Research Partners reposted this
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
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Rare Disease Research Partners reposted this
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
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Rare Disease Research Partners reposted this
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!
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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
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