British Porphyria Association
Supporting patients and families affected by porphyria across the UK.
Our collaborators
Built with the rare disease community
My Rare Journey has been shaped through ongoing conversations with patient organisations, researchers and people living with rare diseases.
Our partners
Organisations who have engaged with the My Rare Journey platform
Neuroendocrine Cancer UK
Supporting patients with neuroendocrine cancers through information and advocacy.
Association for Multiple Endocrine Neoplasia Disorders
Supporting patients with MEN syndromes and related endocrine conditions.
Addison's Disease Self-Help Group
A UK-based charity founded in 1984 that supports people affected by Addison's disease and adrenal insufficiency through patient information, peer support, awareness, and clinical…
Niemann-Pick UK
A charitable organisation dedicated to making a positive difference to the lives of those affected by Niemann-Pick disease through practical and emotional support, raising…
Unique – The Rare Chromosome and Gene Disorder Support Group
A UK-based international organisation providing support and information to all those affected by rare chromosome and gene disorders, with a dedicated helpline and over 350…
Global Porphyria Advocacy Coalition
An international umbrella alliance dedicated to strengthening the global porphyria patient community through education, awareness, mental health initiatives and international…
MediXo
MediXo By 12 Brand is a patient-led health technology company founded by Michael and Judi Goldberg in Boston, Massachusetts. MediXo is building a connected ecosystem for people…
Organisations listed above operate independently.
Our approach
How we work with partners
My Rare Journey operates within a responsible research and innovation framework. We recognise that progress in rare disease research often involves collaboration between patient communities, researchers, healthcare professionals, and industry. We engage with pharmaceutical companies and research organisations in a transparent and structured way.
Patient voice comes first
Every collaboration is designed to centre the patient perspective.
Data are anonymised and aggregated
All data shared with partners is anonymised and aggregated.
No identifiable information shared
Individual-level data remains protected.
Editorial independence
Retained by OpalMedica.
Regulatory compliance
Governed by clear terms.
Where appropriate and where consent has been granted, anonymised aggregated datasets may be licensed to research institutions and industry partners. No third party has access to identifiable individual-level data. No individual story is ever identifiable and organisations remain independent.
Photography by Graham G Miller. His work reflects real people living with rare diseases. All rights reserved.
Let's work together
If you are interested in collaborating with us please contact us at support@opalmedica.co.uk