Solidarity is the motto of FEDERG: Solidarity of patients towards each other, solidarity between associations and patient groups, and solidarity between countries.
As most of the Renal Genetic Diseases (RGD) are considered as rare diseases, patients with RGD are commonly concerned affected by this aspect (rareness): we share the rarity of our conditions.
There are however numerous rare diseases, hence Renal Genetic Diseases (RGD) collectively account for about 10 % of patients reaching ESRD in Europe. Besides autosomal-dominant polycystic kidney disease (ADPKD), which, with a prevalence of 1:1000 is by far the most frequent, there are approximately 40 rare and up to 200 extremely rare RGD, affecting all structures of the nephron. The economic burden of RGD is huge, since dialysis treatments of affected patients account for 0.2 % of national healthcare budgets and most orphan drugs are very expensive.
RGD may impact the quality of life and relationships of a whole family including reproductive/family planning matters. Although the clinical consequences of the kidney disease vary with each pathology, patients with RGD are sharing numerous aspects, which are related to the medical course as well as life quality:
- Diagnosis, Treatments, dialysis and transplantation
- Genetic transmission, decision about pregnancy
- Difficulties in growing as a child, teen ager and young adult
- Social life, educational and working conditions
At national level we share many aspects related to public health (treatment cost coverage, rare diseases policy, etc…).
As we share many aspects of our conditions, the sense of “Solidarity” is very strong among us. Solidarity is a key value for rare/orphan diseases: as patients affected by rare disease or as association of patients, we turn to society for more solidarity towards the ones suffering from these orphan diseases. In turn, our duty is to genuinely help each other, making solidarity within our groups of patients a reality. In RGD you have rare, less rare and extremely rare diseases. The spirit, on which such an umbrella organization as FEDERG is built, makes each member fighting not only for his disease but for all diseases.