Rare Diseases – Stories, Pictures & Hope
A platform for people with rare diseases, their families, and supporters.
Here you will find personal stories, photography, knowledge, and exchange—from those affected for those affected.
About me
I created this website because I myself suffer from a rare disease—Fabry disease.
From my own experience, I know how stressful long diagnostic processes, limited information, and feelings of isolation can be. This platform is intended to offer people with rare diseases and their families a space for exchange, guidance, and networking.
The website is diagnosis-independent, open, and non-commercial. I welcome exchange, feedback, and networking with patients, families, initiatives, and organizations in the field of rare diseases.
Connecting people with rare diseases through visibility, exchange, and mutual support.
⚖️ Important notice
The contents of this website are for informational and exchange purposes only.
They are not a substitute for medical, therapeutic, or legal advice.
If you have any health questions, please consult a qualified professional.
support
Your support makes a difference
This website is a labor of love. A lot of time, research, and passion has gone into the content you find here. My goal is to provide helpful and easily accessible information for everyone. In order to secure this project in the long term, I am dependent on financial support. Every contribution—no matter how small—is valuable and contributes directly to the maintenance and improvement of the website.
buymeacoffee.com/rarediseases
Events
Events I will be attending
📅 28. Februar 2026 – Tag der Seltenen Erkrankungen 2026
https://www.rarediseaseday.org/
11.-13. März – Augenärzte Kongress Düsseldorf
11. März Hausärzte-Kongress Frankenthal
17. April 2026 – 10. Rare Disease Symposium & Eva Luise Köhler Forschungspreis – Berlin, Deutschland
https://elhks.de/en/savethedate-rds-fp2025/
27.05. – 29.05. 2026 SightCity Frankfurt
SightCity 2026 in Frankfurt | LHON Deutschland e.V.
10. Oktober 2026 – SEBRACON – Convention für seltene Erkrankungen – Berlin, Deutschland
03.–04. Juni 2026 – European Conference on Rare Diseases & Orphan Products (ECRD) – Prag (Hybrid, online möglich)