July 5, 2020         
Trend Micro and Girls in Tech Partner to Help Close the Gender Gap in the Technology Industry   •   The ODP Corporation Releases 2020 Corporate Sustainability Report   •   U.S. Soldier Desperately Seeks Public Support to Bring His Two Dogs Home From Overseas   •   Support for Canada's Forest Sector Economic Recovery   •   Most Americans Not Very Comfortable Returning to Restaurants, Retail Stores and Hotels for Next Three Months, Survey Shows   •   Smarter Homes. Better Life. - Covia and the Ziegler Link•age Funds Look to the Future of Middle-Market Senior Living   •   Proposition 21! – California Rent Control Ballot Measure Now Heads to Voters in November as Campaign Rolls Out 200+ Endors   •   San Luis Obispo Assisted Living Professionals Releases Guidelines for Finding the Right Assisted Living During the COVID-19 Cris   •   P&G to Webcast Discussion of Fourth Quarter 2019/20 Earnings Results on July 30   •   Citizens for a Pro-Business Delaware Slams Delaware Department of Correction and Governor Carney for Politicizing Mask Donations   •   How Race And Implicit Bias Impact The Practice Of Law   •   Coty Names Sue Y. Nabi Chief Executive Officer   •   GrillGirl.com Launches “Grill School,” a Virtual Grilling Series to Empower Everyone to Learn to Grill   •   Top Local Atlanta Executives and Leaders Join Women in Technology to Host Inaugural Virtual Gala, WIT Connect 2020   •   Phi Beta Sigma Fraternity, Inc. Donates $50,000 to National Urban League   •   Hormel Foods Announces Inspired Giving Commitment to Support Equity and Education   •   e.l.f. Beauty Announces Agreement with Marathon Partners   •   All TTR Employees Get 12 Weeks Paid Parenting Leave   •   Dixon, Rahal Head Honda 1-2 at GMR Grand Prix in Indianapolis   •   Nintendo Download: Invert Your Aim, Invert Your World
Bookmark and Share

/R E P E A T -- Rare Disease Day initiative celebrates Canadians' differences, shines light on Canadians living with rare diseas

/R E P E A T -- Rare Disease Day initiative celebrates Canadians' differences, shines light on Canadians living with rare diseases/

Canada NewsWire

Public invited to attend What Makes You Rare? event at Brookfield Place on February 28, 2020

TORONTO, Feb. 24, 2020 /CNW/ - Josie Dye's six-year-old son, Cole, lives with Sotos Syndrome, a rare disease characterized by overgrowth in childhood that is typically accompanied by learning challenges.

Since Cole's birth, Josie and her family have lived through many of the challenges common to families coping with a rare disease. Some of these challenges can include finding an accurate diagnosis, the availability of treatment and gaining access when therapies are approved, and securing the ongoing care needed to support health and quality of life.

As a radio host, broadcaster and mom, Josie is sharing her family's experience in the hopes of increasing awareness about rare diseases in Canada, as well as helping combat the feelings of isolation many patients and their families feel. It's an important message for the estimated one in 12 (or more than three million) Canadians who live with a rare disease, two-thirds of whom are children.i 

"Families need to remember that you're not alone," says Josie. "Sometimes we feel like we're sinking, and that we're the only ones struggling, but there are so many out there who are living with a rare disease. Being able to connect with others, who either share your experience or are willing to offer support, is absolutely crucial to long-term wellbeing."

What Makes You Rare?

With the goal of bringing attention to this remarkable and resilient community, the Canadian Organization for Rare Disorders (CORD), in partnership with Sanofi Genzyme, is helping to highlight the stories of these patients and families to mark Rare Disease Day 2020.

"It is critically important to share the stories of those living with rare diseases in Canada," says Durhane Wong-Rieger, President & CEO, CORD. "When we listen to their experiences, we are more educated about, and more empathetic to, the challenges these individuals and their families encounter every day. In turn, we can each become champions of the rare disease community, helping to advocate for the services and support they need."

To encourage this national storytelling, CORD and its patient group partners Answering TTP Foundation, Canadian Association of Pompe, Canadian Fabry Association, Canadian MPS Society, and The National Gaucher Foundation of Canada, are posing the question "What makes you rare?".  The question is meant to inspire Canadians to think about and articulate their own unique stories and share them as a sign of solidarity and support for the rare disease community. Canadians are encouraged to share their own answers via social media on the "What Makes You Rare?" Facebook event page.

Rare Disease Day 2020 Event: February 28, 2020, 8 AM to 6 PM, Brookfield Place (downtown Toronto)

In a further effort to help educate the general public about rare diseases and engage Canadians in a conversation about living with a rare disease in Canada, Josie, CORD, the partner patient associations and Sanofi Genzyme are hosting an interactive "What Makes You Rare?" event on February 28, 2020, from 8 a.m. to 6 p.m., at Brookfield Place in downtown Toronto.

At the event, visitors can engage with the different stories of Canadians in the rare disease community through original photography and videos.

"Rare Disease Day is a wonderful opportunity to become more educated about rare diseases and their impact," says Josie, "but it can't stop there. It's important to remember that we live with these rare diseases 365 days a year. For us, every day is Rare Disease Day."

Rare Disease Day 2020 Event Partners

About Canadian Organization for Rare Disorders (CORD)

CORD is Canada's national network for organizations representing all those with rare disorders. CORD provides a strong common voice to advocate for health policy and a healthcare system that works for those with rare disorders. CORD works with governments, researchers, clinicians and industry to promote research, diagnosis, treatment and services for all rare disorders in Canada. For more information, visit www.raredisorders.ca

________________________________

i https://www.raredisorders.ca/about-cord/

SOURCE Canadian Organization for Rare Disorders



Back to top
| Back to home page
Video

White House Live Stream
LIVE VIDEO EVERY SATURDAY
alsharpton Rev. Al Sharpton
9 to 11 am EST
jjackson Rev. Jesse Jackson
10 to noon CST


Video

LIVE BROADCASTS
Sounds Make the News ®
WAOK-Urban
Atlanta - WAOK-Urban
KPFA-Progressive
Berkley / San Francisco - KPFA-Progressive
WVON-Urban
Chicago - WVON-Urban
KJLH - Urban
Los Angeles - KJLH - Urban
WKDM-Mandarin Chinese
New York - WKDM-Mandarin Chinese
WADO-Spanish
New York - WADO-Spanish
WBAI - Progressive
New York - WBAI - Progressive
WOL-Urban
Washington - WOL-Urban

Listen to United Natiosns News