Built with the rare disease community

British Porphyria Association

Supporting patients and families affected by porphyria across the UK.

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 education.

Niemann-Pick UK

A charitable organization dedicated to making a positive difference to the lives of those affected by Niemann-Pick disease through practical and emotional support, raising awareness, and facilitating research into potential therapies.

Unique – The Rare Chromosome and Gene Disorder Support Group

A UK-based international organization providing support and information to all those affected by rare chromosome and gene disorders, with a dedicated helpline and over 350 information guides translated into 22 languages.

Global Porphyria Advocacy Coalition

An international umbrella alliance dedicated to strengthening the global porphyria patient community through education, awareness, mental health initiatives and international engagement, ensuring no one faces porphyria alone.

Organizations listed above operate independently.

My Rare Journey operates within a responsible research and innovation framework. We recognize that progress in rare disease research often involves collaboration between patient communities, researchers, healthcare professionals, and industry. We engage with pharmaceutical companies and research organizations in a transparent and structured way.

Where appropriate and where consent has been granted, anonymized 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 organizations remain independent.