Autosomal dominant polycystic kidney disease (ADPKD) is one of Europe's leading causes of kidney failure - more than half of patients progress to the point where they will have kidney failure and need a transplant by middle-age.
Twelve months ago, the Brussels declaration on ADPKD action plan was launched to champion better standards for patients.
According to the European ADPKD Forum (EAF) "great progress" has been made in the past year, with new measures being taken to ensure that patients have "appropriate expertise" at each stage of care. Some 30 leading organisations are also now backing the campaign.
Now campaigners have made a renewed call for "urgent backing" to address a "ticking time bomb" and "widespread inequalities and variations in care" that remain.
The demand comes in a letter from the EAF to 350 EU policymakers, including the Parliament and Commission. MEPs, in particular, are being targeted for their support to improve standards.
The letter, timed to coincide with World Kidney Day (10 March), calls for "sustained and coordinated" efforts for patients with ADPKD, a "painful and debilitating" inherited disease.
The EAF says many of the measures it proposed in its action plans 12 months ago are still to be implemented, including "greater networking" of specialist treatment centres.
Other measures yet to be introduced include increased collaboration between medical specialists and patient representatives.
Campaigners also say that chronic kidney disease should be included in any EU-led action on tackling other conditions such as heart disease, cancer and diabetes.
Tess Harris, co chairman of EAF, said, "However, this disease justifies specific measures that take into account the effect on family members and its multi-faceted and variable life-long course."
She says ADPKD has a "profound and under-recognised impact on the lives of affected adults, children and families."
While health is largely a competence of member states, she says the EU has a role to play in sharing best practice and supporting both research and the creation of "centres of excellence."
Harris says, "A Europe-wide network of ADPKD reference centres would generate more research and education."
"If we get it right, ADPKD could set the standard for policy development in other complex genetic conditions."