On­tario helps those with rare dis­eases

The Hamilton Spectator - - CANADA & WORLD - THE CANA­DIAN PRESS

TORONTO — The On­tario gov­ern­ment said Mon­day it was im­prov­ing ac­cess to spe­cial­ized care for peo­ple liv­ing with rare dis­eases.

Health Min­is­ter Eric Hoskins an­nounced the open­ing of a new clinic for peo­ple with Eh­lers-Dan­los Syndrome and the ex­pan­sion of clin­ics for those with in­her­ited metabolic dis­or­ders and red blood cell dis­or­ders in Toronto.

The On­tario gov­ern­ment is mak­ing an ini­tial in­vest­ment of $991,000 to sup­port the launch of the EDS clinic and “an­nu­al­ized fund­ing” in the years ahead, Hoskins said.

EDS is a group of in­her­ited dis­or­ders that af­fect the con­nec­tive tis­sue sup­port­ing many body parts. Peo­ple with EDS are prone to chronic pain, joint dis­lo­ca­tion and lost vi­sion.

The prov­ince says EDS af­fects ap­prox­i­mately one in 5,000 peo­ple and re­quires a com­bi­na­tion of ef­forts to be di­ag­nosed and treated prop­erly.

The new EDS clinic is run by the Hos­pi­tal for Sick Chil­dren and the Univer­sity Health Net­work in Toronto.

The prov­ince said the clinic will give pri­mary care providers a sin­gle point of con­tact to get in­for­ma­tion on signs of the dis­ease, re­ceive ad­vice and feed­back from ex­perts on di­ag­no­sis and treat­ment op­tions and make re­fer­rals to spe­cial­ists.

The other clin­ics that are be­ing ex­panded are also in the Univer­sity Health Net­work and will help pa­tients with red blood dis­or­ders such as Sickle Cell Dis­ease, Tha­lassemia and metabolic dis­or­ders such as Phenylke­tonuria, Hoskins said.

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