@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, D's story — Rare Disease Research Partners, K's Story — Rare Disease Research Partners, K's Story 2 — Rare Disease Research Partners, Barriers and facilitators to clinical trial participation, T's Story — Rare Disease Research Partners, 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., Gastrointestinal Manifestations in Mucopolysaccharidosis Type III: Review of Death Certificates and the Literature, 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, Identifying early indicators of mucopolysaccharidosis disorders using UK parent-held child health records, 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.