This document provides information about Rare Disease Day events and awards that took place on March 21, 2018 in Ottawa. It summarizes the awards presented for Policy Leadership, Rare Disease Leadership, Scientific Leadership, volunteer contributions, and patient organization support. It also lists monuments across Canada that were lit up in recognition of Rare Disease Day on February 28, 2018. Finally, it outlines CORD's roles advocating for rare diseases internationally, nationally, and provincially.

1. Rare Disease Day
Gala Awards Dinner
Celebration
March 21, 2018
Delta Ottawa City Centre

2. Policy Leadership Award
This award is presented to an individual whose
leadership in policy on rare diseases has made
a significant contribution to the rare disease
community.
Presented to:
Dr. Eric Hoskins

3. Rare Disease Leadership Award
This award is presented to an individual who
has demonstrated outstanding leadership in
the rare disease community.
Presented to:
Michael Harris

4. Scientific Leadership Award
This award is presented to a distinguished
researcher whose career represents a unique
blend of scientific excellence and support of
the patient community.
Presented to:
Dr. Daniel Drucker

5. CORD Volunteer Award
This award is presented to an individual who
has made an outstanding contribution to CORD
and the rare disease community on a volunteer
basis.
Presented to:
Wayne Critchley

6. Patient Organization Award
This award is presented to a CORD
Affiliate Member group making an outstanding
contribution in patient support or advocacy.
Presented to:
Scleroderma Canada

7. Rare Disease Day – February 28, 2018
Queen’s Park

8. Rare Disease Day – February 28, 2018
Queen’s Park

9. Rare Disease Day – Monument Illuminations
Nathan Phillips Square
Toronto, Ontario
CN Tower
Toronto, Ontario
High Level Bridge
Edmonton, Alberta
Skylon Tower
Niagara Falls, Ontario
The Falls
Niagara Falls, Ontario
Langevin Bridge
Calgary, Alberta
CORD was proud to have the following monuments recognize Rare Disease
Day on February 28 by using special themed lighting.
Calgary Tower
Calgary, Alberta

10. 3rd Annual Rare Disease Day Fundraiser – Virden,
Manitoba

11. CORD Press Conference – March 20, 2018

12. Action Day on Parliament Hill – March 20, 2018

13. Action Day on Parliament Hill – March 20, 2018

14. Action Day on Parliament Hill – March 20, 2018

15. “Mr. Speaker, eight-year-old
Olivia Little from Port Elgin,
Ontario, has been rejected
by Health Canada twice for
access to the life-saving
drug Cystagon through the
special access program.
[…]
Why is the Liberal health
minister making access to
life-saving medications
difficult for most vulnerable
Canadians?”
Question Period – March 20, 2018

16. “Mr. Speaker, our government recognizes
the importance of Canadians having access
to safe effective treatment such as
Cystagon for rare diseases. We are
committed to improving the affordability,
accessibility, and the appropriate use of
medication, and have proposed
amendments to the Patented Medicines
Regulations in order to prevent excessive
prices for patented drugs, including those
for
rare diseases.
Health Canada's special access program
continues to consider requests for access to
treatment for patients with cystinosis when
marketing drugs are not medically suitable.”
Question Period – March 20, 2018

17. “Mr. Speaker, it gets worse.
Hundreds of Canadians,
including 10-year-old Evan
Palmer, in my riding, suffer
from spinal muscular atrophy,
a life-threatening rare
disorder. Bureaucrats have
approved Spinraza, but only
for the most acute cases,
using one clinical trial study
of one subgroup.
[…]
Will the minister commit to
overruling her bureaucrats so
that Evan and other SMA
patients can get the medicine
they need?”
Question Period – March 20, 2018

18. “Mr. Speaker, Health Canada is
committed to providing access to safe
and effective therapeutic products,
including products to meet the needs of
patients with rare diseases.
Spinraza was reviewed as a priority and
approved for treatment for patients with
spinal muscular atrophy in the summer of
2017. As with all medications, the
responsibility for decisions regarding
funding and reimbursement lies primarily
with provinces and territories.”
Question Period – March 20, 2018

19. “Mr. Speaker, a six-year-old
girl from my riding came back
from the Caribbean with a
hookworm infection. Although
three doctors, from Sarnia,
London, and SickKids in
Toronto, said that the girl
needed albendazole, she was
turned down by the
government's special access
program. This is not an
isolated case.
Why does this government
ignore vulnerable
Canadians?”
Question Period – March 20, 2018

20. “Mr. Speaker, our government is
committed to improving access to
necessary prescription drugs and
ensuring that products on the Canadian
market remain of the highest quality. To
that end, our department has recently
launched an initiative to improve the
regulatory review of drugs and devices. It
is a major effort to increase the
availability of prescription drugs,
including drugs for rare diseases. This
initiative will help improve access to the
therapeutic products needed to better
meet the needs of the health care
system.”
Question Period – March 20, 2018

21. SMA Rally – March 20, 2018

22. SMA Rally – March 20, 2018

24. Canada’s Rare Disease Strategy
1. Improving early detection and prevention
2. Providing timely, equitable and
evidence-informed care
3. Enhancing community support
4. Providing sustainable access
to promising therapies
5. Promoting innovative research

25. Wayne Critchley,
Chair
Cathy Evanochko,
Vice Chair
Maureen Smith,
Secretary
Riyad Elbard,
Treasurer
Patti Bryant, Executive
Member-at-Large
John Moore,
Board Member
Joanne Koskie,
Board Member
Patricia Posius,
Board Member
Board of Directors
2017 - 2018
Staff
Angela Covato,
Managing Director
Hilary Wong-Rieger, Office
Coordinator (Volunteer)
Durhane Wong-Rieger,
President & CEO
Ian Stedman,
Board Member

26. Staff and Board Members of CORD are actively involved in a number of
initiatives where they represent CORD and the rare disease community.
International
Chair of Rare Disease International
Rare Disease International Advocacy
Committee
RDI Working Group on Research
EURORDIS
European Congress on Rare Diseases
United Nations Nongovernmental
Organization (NGO) on Rare Diseases
ISPOR Roundtable on HTA
HTAi Citizen and Patient Involvement
Group
International Alliance of Patient
Organizations
PCORI Rare Disease Advisory Panel
Cochrane International
CureAccelerator, Cures Within Reach
– Public Reviewer
BMJ (British Medical Journal) –
Patient Reviewer
National
Rare Alliance Canada
CIHR Institute of Genetics
PRISM Patient Liaison Committee
Patients for Patient Safety
Canadian Association for Population
Therapeutics Conference Committee
CIHR Reviewers
Network of Rare Blood Disorder
Organizations
CADTH Patient Liaison Group
Canadian Society for Pharmaceutical
Science
Canadian Association for Healthcare
Reimbursement
Canadian Association of Paediatric
Health Centres
CARE (Community Academic
Research Education)
Provincial
Working Group on Ontario Rare
Disease Strategy
Rare Diseases Implementation Plan
Steering Committees:
Sub-Group for Objective 1: Rare
Disease Hub-and-Spoke Network
Sub-Group for Objective 2: Access to
Genomic Diagnostics
Sub-Group for Objective 3:
Registries
SPOR Steering Committees and
Working Groups (Alberta, Ontario,
Atlantic Canada)
Rare Disease Foundation – Parent 2
Parent Group – Avalon Chapter
Research and Trials (SUPPORT) Unit
CORD - Championing Rare Disease Issues

27. CORD wishes to thank the following Gala
Sponsors for their generous support and
dedication to the rare disease community.

28. Grand Champion Sponsor

29. Benefactor Sponsors

30. Hope Sponsors
Tina Boileau & Jonathan Pitre
Jim McQuaid
Tara Shannon
Maureen Smith
Kate White
Special Thanks

31. Share the rare!
@raredisorders
#Canada4Rare