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-   -   Rare Disease Day 2020 (http://forums.marrowforums.org/showthread.php?t=6513)

AAMAC Sat Feb 29, 2020 10:42 AM

Rare Disease Day 2020
 

Alexion Pharmaceuticals, Inc. Canada has invited a member of the AAMAC team to an open house at their office headquarters in Vaughan, Ontario.

The event features an opportunity to meet with Alexion team members, share personal stories and learn more about rare diseases from experts and patient advocacy organizations.

#rarediseaseday
#rallyforrare
#showyourstripes

AAMAC Sat Feb 29, 2020 12:49 PM

Rare Disease Day 2020
 
In Canada, 1 in 12 people are afflicted with a rare disease.

Together, people with rare diseases are not so rare.

Canada is one of the few developed countries without a national rare diseases strategy to guide diagnosis, treatment and management of rare diseases.

The appeal, “Not so rare”, calls on governments to implement a national strategy for rare diseases as fast as possible – because diseases don’t wait!

Please sign the petition (see https://notsorarediseases.com/ ).
Share with friends.

#rarediseaseday
#rarediseaseday2020
#rallyforrare
#showyourstripes

AAMAC Sat Feb 29, 2020 02:38 PM

Rare Disease Day 2020
 
Regroupement québécois des maladies orphelines has invited a member of the AAMAC team to an event in Montreal in celebration of Rare Disease Day as well as recognizing the RQMO's 10th anniversary.

#rarediseaseday
#rarediseaseday2020
#rallyforrare
#showyourstripes

AAMAC Sat Feb 29, 2020 04:32 PM

Rare Disease Day 2020
 
It’s not too late for you to celebrate if you live in the GTA. Join our Board Chair at a breakfast reception at Queen's Park in celebration of Rare Disease Day on March 3 hosted by Canadian Organization for Rare Disorders (CORD)

This will be an opportunity for patients, families, and advocates to meet with members of the Provincial Parliament and other supporters. This event is open to the public. Please visit CORD's website to learn more. www.RareDisorders.ca
#rarediseaseday
#rarediseaseday2020
#rallyforrare
#showyourstripes


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