Patients’ inequalities of treatment

Patients’ inequalities of treatment

(Opinion piece published in « Le Monde » (French newspaper) on 15th May 2021).

Even if this piece concerned Bourneville Tuberous Sclerosis, another rare skin disorder, Cutis Laxa shares most of its arguments :

* The Diagnosis odyssey


* Various Symptoms that do not make the disease « visible » to the Authorities


* Only one support organisation, the only recourse to advocate for patients’ rights, and the only source of funding of projects led by the organisation.


Little/no support for research


* Depending on where they live, some patients do not have access to expertise for their disease.


Refusal to cover travelling costs to hospitals


It is necessary to break those inequalities in funding and favour patients instead of economics.