Find support, or help research
People near you who know what living with Pompe disease is like, and ways you can help find better treatments.
Support groups in Türkiye
- MPS LH Derneği – Mukopolisakkaridoz ve Benzeri Lizozomal Depo Hastalıkları DerneğiTurkish association for MPS and related lysosomal storage diseases, including Fabry, Gaucher and Pompe disease; listed by FIN, IGA and IPA.All of Türkiye
- Nadir Hastalıklar FederasyonuTurkish federation founded by rare-disease patients and families to raise awareness and address their problems; members are rare-disease patient associations.All of Türkiye
Contact details come from each group's own page and are checked every 3 months.
Help research
You do not need to join a trial to help. Below are the programmes we found in Türkiye and how to reach them. You contact them yourself: Frontlight does not collect or pass on your details.
Give blood or tissue for researchResearchers use stored samples to find what causes Pompe disease.
Share your health dataA registry collects health data, without your name, so research teams can study many people at once.
Take part as a healthy volunteerStudies need people without Pompe disease to compare with. Family and friends can help.