You could take action and play an active role by writing your Senators and Representatives if you are a US Citizen. You can compose your message with the help of the PKD Advocacy Network.
Priorities for this year as enumerated by the PKD Foundation include:
- Funding for PKD research at the National Institutes of Health (NIH)
- Support for the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act, which will extend coverage of vital immunosuppressive drugs to Medicare transplant patients beyond the 36 month limit.
- Support for the MODDERN Cures Solutions Act that will seek to streamline the regulatory system in drug development process to help move potential treatments to PKD patients faster and more efficiently.
If you are a Non-US Citizen, then I am here to inform you that there is such a hereditary disease called polycystic kidney disease (PKD) and it may be under-reported in your country because of poor awareness. PKD may manifest as elevated blood pressure in the young, recurrent urinary tract infection, hematuria, kidney stones, flank pains just to name some manifestations.
PKD is a difficult disease to have but there is still life after PKD and there is hope if only we could help make other people aware so that there would be more researches toward a cure.
If you have PKD or have a relative with PKD then maybe we can have a network here and share experiences and learn from them. Let us support each other and our friends.