Based on the German PH self-help group, which was founded on 16.09.2005 in Cologne and is a non-profit, registered association with its headquarters in Cologne, the European PH Patient advocacy group was founded in November 2019. Together we would like to achieve better information and attention about and for primary hyperoxaluria. We would also like to overcome the language barrier in Europe by trying to provide information in all languages.
Many of us have had to endure a long series of agonizing diagnoses, hospital stays and examinations on the way to a confirmed diagnosis of primary hyperoxaluria. With proper knowledge of the symptoms, both among those affected and their families, and among the doctors treating them, some examinations could be avoided in part or in whole.
Especially with children, frequent examinations and hospital stays often leave behind lasting negative effects on their further development and social behaviour.
Due to the rarity of the disease and the fact that the symptoms of primary hyperoxaluria are not always fully present or often not attributed to the disease, there are also very few doctors who have heard about the disease more than once and have gained real experience with it.
Therefore, despite intensive diagnostics, it is often only a coincidence if a treating physician knows the individual symptoms of primary hyperoxaluria, brings them in connection with the disease and initiates the correct examinations for a reliable diagnosis of primary hyperoxaluria.
Apart from the possibility of exchanging experiences between the members, it is an urgent task of the Advocay group to help especially those children and persons, with whom only individual symptoms of primary hyperoxaluria are present and with whom no reliable diagnosis is available yet, by means of targeted dissemination of information about the disease.
These are mainly paediatricians, nephrologists and urologists, who are often the first point of contact for children and patients with urolithiasis (kidney stones), nephrocalcinosis, renal colics and pathological urine findings and who, if they are aware of the symptoms, could consider early suspicion of primary hyperoxaluria in order to possibly initiate further targeted diagnostic measures.
Our goals are:
to spread the general knowledge about the metabolic disorder primary hyperoxaluria and to bring the disease into the consciousness of the people in order to be able to react accordingly when individual symptoms occur already in childhood
to promote the exchange of experience between affected families among themselves and the treating physicians in order to make it easier for patients to cope with the disease
promote better information for doctors and other therapists on the symptoms, diagnosis, course and treatment of primary hyperoxaluria
to pool scientific knowledge and clinical experience in the treatment of primary hyperoxaluria and use it for the benefit of the children affected, and to inform families and doctors about the possible clinical pictures
to inform about therapy options through targeted public relations work and publications
to support research into primary hyperoxaluria and possible forms of therapy