@rd_rp

rd_rp has been a member of Linktree for 3 years and joined in December 2022. The social media accounts linked to from rd_rp are: • Instagram • LinkedIn • Email Besides social media accounts, rd_rp has populated their site with: • My 5-Year Journey in a Cutting-Edge Gene Therapy Trial — Rare Disease Research Partners • Bob Stevens - Rare Revolution Magazine Interview - April 2026 • pathway to diagnosis and burden • Diagnosis of MPS in the UK • Barriers and facilitators to clinical trial participation: improving accessibility, logitics and awareness • Engaging patient and advocates in rare disease clinical trials — Rare Disease Research Partners • The Covid-19 pandemic and the challenges faced by clinical trial participants — Rare Disease Research Partners • Language barriers and clinical trials — Rare Disease Research Partners • Emigrating when participating in a clinical trial — Rare Disease Research Partners • 2023 Survey 'Rare Minds Matter' • Pathway to diagnosis and burden of illness in mucopolysaccharidosis type VII - a European caregiver survey • Identifying early indicators of mucopolysaccharidosis disorders using UK parent-held child health records • Patient reported outcomes in MPS IVA patients receiving enzyme replacement therapy • D's story — Rare Disease Research Partners • T's Story — Rare Disease Research Partners • K's Story — Rare Disease Research Partners • Medical Education Needs to Improve Diagnosis of Fabry Disease in the UK • The impact of Fabry symptoms on patients’ quality of life (QoL) and mental health - a qualitative interview study in the UK • Diagnosis of Fabry Disease in the UK • Barry Simner: Anecdote on living with Fabry • Fabry Awareness Month Patient Stories • MPS Society Awareness Week 2026 - JustGiving • MPS Conditions • The impact of Fabry symptoms on patients' quality of life (QoL) and mental health - a qualitative review in the UK • BOBI Awards 2025 - RDRP Winners Statement • K's Story 2 — Rare Disease Research Partners • Barriers and facilitators to clinical trial participation • M's Story — Rare Disease Research Partners • Empowering Fabry Conversations: Bridging the Communication Gaps • P's Story — Rare Disease Research Partners • Posters — Rare Disease Research Partners • Research Database Registration • Real-life impacts of olipudase alfa: The experience of patients and families taking an enzyme replacement therapy for acid sphingomyelinase defciency • The burden of disease in metachromatic leukodystrophy: results of a caregiver survey in the UK and Republic of Ireland • Current vacancies • Management of Acute and Chronic Complications of Lysosomal Storage Diseases in Children and Adults: Current Practice and Future Opportunities • Gastrointestinal Manifestations in Mucopolysaccharidosis Type III: Review of Death Certificates and the Literature • Guidelines for the Li–Fraumeni and heritableTP53-related cancer syndromes • The importance of early diagnosis and views on new-born screening in metachromatic leukodystrophy: results of a Caregiver Survey in the UK and Republic of Ireland • Enhancing the value of clinical networks for rare diseases • Mortality in patients with alpha mannosidosis: a review of patients’ data and the literature • Elosulfase alfa in the treatment of mucopolysaccharidosis type IVA • The Burden of Disease in Metachromatic Leukodystrophy: Results of a Caregiver Survey in the UK and Republic of Ireland. • Impact of long term elosulfase alfa treatment on clinical and patient reported outcomes in patients with mucopolysaccharidosis type IVA: results from a Managed Access Agreement in England • The importance of psychological support for parents and caregivers of children with a rare disease at diagnosis • The importance of early diagnosis and views on newborn screening in Metachromatic Leukodystrophy (MLD) • Maintaining access to clinical trials during the COVID-19 pandemic • Mortality in patients with alpha-mannosidosis • Diagnososis of mucopolysaccharidoses (MPS) in the UK • Understanding challenges for ultra-rare lysosomal storage disorders: Patient and caregiver experience of care and support through the disease journey • The impact of COVID-19 on Fabry patients receiving enzyme replacement therapy (ERT) • MLD Burden of Disease • Barriers to Participation in Clinical Trials • Understanding Fabry in families: Preliminary findings from a global survey • Understanding Fabry in Families Study –the availability of pedigree testing, genetic counselling and understanding of inheritance across Fabry International Network countries • Diagnosis of Fabry disease in the UK - Poster • Audit of a rare disease clinical trial support service poster • Bob Stevens Rare Revolution Magazine Interview • RDRP Video