Not sure how open anyone’s doctor would be to filing a nomination form for genomic research into PFS, but it may be worth a try:
Nominating a disease for inclusion in the 100,000 Genomes Project or proposing a change to existing eligibility criteria
http://www.genomicsengland.co.uk/nominating-a-disease/
Rare disease nomination form
http://www.genomicsengland.co.uk/disease-nomination-form/
Unfortunately, it appears to be available only to physicians within the NHS and the program seems to be focused on monogenic (associated with a single gene) diseases.
Not sure if there is enough data or strong enough official recognition of PFS yet.