Charity 802775791RR0001

REsearch:

Understanding what patients goes through is difficult especially when enough research is not available making it harder for patients and the medical community to understand the ins and out of each condition. Here we share Reserach information available to help the public better understand each condition. If you have any research documents please email it to us at smcm@carionfenn.org. Document are for information only please contact you medical team for your treatment and medical care. 

News

PC MPP proposes Ontario all-party committee on rare disease treatment

TORONTO -- A woman whose immune system is attacking her body's cells -- one of only about 30 people in Ontario with the condition. A mother who took her children to the United States so they could regain some mobility lost due to their rare connective tissue disorder. A man whose rare condition went undiagnosed for 32 years until he took research into his own hands.

http://london.ctvnews.ca/pc-mpp-proposes-ontario-all-party-committe... 

American Journal of Medical Genetics Part C

(Seminars in Medical Genetics)
R E S E A R C H R E V I E W:

Neurological and Spinal Manifestations of the Ehlers–Danlos Syndromes
FRASER C. HENDERSON SR.,* CLAUDIU AUSTIN, EDWARD BENZEL, PAOLO BOLOGNESE, RICHARD ELLENBOGEN, CLAIR A. FRANCOMANO, CANDACE IRETON, PETRA KLINGE, MYLES KOBY, DONLIN LONG, SUNIL PATEL, ERIC L. SINGMAN, AND NICOL C. VOERMANS

​​​​​​​OCTOBER 10, 2017 5PM - 9PM