kfoc 2012 annual report

ASKING CRITICAL QUESTIONS - ACHIEVING MEANINGFUL IMPACT

M E S S A G E

THE KIDNEY FOUNDATION OF CANADA ANNUAL REPORT 2012 MESSAGE PAGE 1

Throughout 2012, on the cusp of our 50th Anniversary, we engaged the entire kidney community in conversation to better define The Kidney Foundation of Canada’s public benefit. Through this extensive consultation, the National Board of Directors asked two critical questions: What good should The Kidney Foundation of Canada contribute? And for whom?

We received passionate responses from close to a thousand constituents throughout the country. This resulted in the Board creating The Kidney Foundation of Canada’s Public Benefit Policy. Its overarching notion reaffirms that The Kidney Foundation of Canada exists for the enhancement of kidney health and the reduction and, if possible, the elimination of the burden of kidney disease. The primary beneficiary of our work includes all people at risk of and / or affected by kidney disease, principally those living in Canada. Four benefits emerged, summarized by these key words:

Hope-Support-empowerment-engagement

These are further defined in the policy itself, as found on page 3.

Now, as we work together, to define the future public benefit we aspire to achieve, it is timely to look back at 2012 and the path that has taken us to this important conclusion. Throughout the past year, The Kidney Foundation of Canada reduced the burden of kidney disease by: funding and stimulating innovative research; providing education and support; promoting access to high quality healthcare; and increasing public awareness and commitment to advancing kidney health and organ donation.

We committed to important strategic research initiatives, including the Kidney Cancer Research Network and rare genetic diseases research (Alport Syndrome and Fabry disease). Our targeted screening program assessed over 2,000 people at risk of kidney disease throughout the country, while the Kidney Community Kitchen online nutrition resource for people living with kidney disease garnered over 87,000 unique visits.

Through the Kidney Cancer Research Network, led byDr. Michael Jewett at the University Health Network in Toronto, kidney cancer survivors, expert clinicians and researchers from across Canada will facilitate national collaboration on research strategies, clinical trials, and resources for the treatment of patients.

Left to right: Mr. Paul Shay, Dr. Mary Gospodarowicz, Dr. Michael Jewett, Dr. Colin Carrie, Ms. Deb Maskens, Ms. Catherine Madden.


M E S S A G E

THE KIDNEY FOUNDATION OF CANADA ANNUAL REPORT 2012 MESSAGE PAGE 2

We organized many activities throughout the country to raise awareness of and promote organ donation, including a Day on Parliament Hill for World Kidney Day. Our fourth national Kidney Stories of Hope Campaign helped shine a light on kidney disease, its toll and the prospects for a better life. Moreover, we launched publicly our New Challenge Campaign to raise the funds needed to break through barriers, challenge limits and change the lives of those affected by kidney disease. We invite you to join the supporters and donors who have responded to our call.

We’re keenly aware that translating critical questions into meaningful impact requires dedicated effort. So as we prepare to celebrate 50 years of service, we thank the many donors, collaborators, volunteers, employees, and members of the kidney community and of the Foundation’s leadership team who help define our public benefit and work tirelessly and creatively alongside us to reduce the burden of kidney disease.

Julian Midgley, M.D., Paul Shay,National President National Executive Director

On March 8, the 2012 World Kidney Day (WKD), Kidney Foundation of Canada

staff, nephrologists from the Ottawa area and kidney transplant recipients took to

Parliament Hill. MPs and Senators were invited to this event highlighting the 2012

WKD themes of the pressing need for additional support of organ donation and

transplantation.

Pictured left to right: Nadine Valk, National Director of Programs and Public Policy, The Kidney Foundation; Michael Chong, MP, Wellington-Halton Hills; Bruce Hill,

Manager, Eastern Ontario Chapter of The Kidney Foundation; Joe Comartin, MP,

Windsor-Tecumseh.


M E S S A G E

THE KIDNEY FOUNDATION OF CANADA ANNUAL REPORT 2012 PUBLIC BENEFIT POLICY PAGE 3


P U B L I C B E N E F I T P O L I C Y

1. HOPE

New knowledge and treatments generating hope will exist in the following areas: 1.1. Knowledge of the kidney and kidney disease. 1.2. Methods by which the new knowledge from research results can be translated into the treatment, prevention, and slowing of the progression of kidney disease. 2. SUPPORT

To achieve optimal health status, all people affected by kidney disease have access to health care and to wellness, socio-emotional, and financial support including: 2.1. Equitable access to appropriate cost-effective treatment, as close to home as possible,regardless of background and personal circumstances. 2.2. Timely access to successful long-term organ transplantation, if desired and appropriate.2.3. Comfort for those who withdraw from or do not wish dialysis treatment.

3. EMPOWERMENT

All people affected by kidney disease are empowered to maximize their outcomes.3.1. People have the knowledge to make effective choices to prevent, minimize, and seektreatment for kidney disease.3.2. People can advocate for themselves and others when navigating the system.3.3. The kidney community has a sense of belonging and a collective voice. 4. ENGAGEMENT

4.1. An informed Canadian public understands and responds to the impact of kidney disease.4.2. Effective provincial and federal policies and strategies exist for kidney research, kidney care, organ donation, and transplantation.

Niloufer Bhesania, volunteer and Past National President

of The Kidney Foundation leads a consultation session

on Public Benefit.


R E S E A R C H

THE KIDNEY FOUNDATION OF CANADA ANNUAL REPORT 2012 RESEARCH PAGE 4

We’ve invested over $100 million in kidney research; and the researchers whose work we support have been asking critical questions in the hope of preventing kidney disease or treating kidney failure.

Why is it important to have a low sodium diet?

“We asked a simple question with our research – could sodium and calcium absorption be linked? And we discovered they are,” says Dr. Todd Alexander, a Kidney Foundation of Canada funded researcher, whose findings were published in 2012 in the peer-reviewed American Journal of Physiology – Renal Physiology. “When the body tries to get rid of sodium via the urine, our findings suggest the body also gets rid of calcium at the same time,” says Alexander. “This is significant because we are eating more and more sodium in our diets, which means our bodies are getting rid of more and more calcium. Our findings reinforce why it is important to have a low-sodium diet and why it is important to have lower sodium levels in processed foods.”

Do kidney stones put you at risk for kidney failure?

Dr. Alexander was also the first author on a study published in the British Medical Journal that found people who have had kidney stones are twice as likely to need dialysis or a kidney transplant later in life. He, along with Dr. Marcello Tonelli, was one of two researchers at the University of Alberta to track the data of more than three million Albertans over an 11-year period from 1997 to 2009. “I think what these results tell me, is that we should be screening those with a history of kidney stones for risk factors for the development of kidney disease,” says Dr. Alexander.

The primary funders of this latter research were: The Kidney Foundation of Canada, Alberta Innovates – Health Solutions, the University Hospital Foundation, and the KRESCENT program.

KRESCENT - Launched in 2005, the Kidney Research Scientist Core Education and

National Training (KRESCENT) Program was designed to expand kidney scientist research

training in Canada and facilitate knowledge transfer from the laboratory setting to the

clinical one, where it could most benefit patients. A unique collaboration among its

three founding partners, The Kidney Foundation of Canada, the Canadian Society

of Nephrology and the Canadian Institutes of Health Research, it has developed

into a prestigious world-class researcher training program.


R E S E A R C H

THE KIDNEY FOUNDATION OF CANADA ANNUAL REPORT 2012 RESEARCH PAGE 5

How can an E. coli outbreak be converted into a vast effort to save lives?

The May 2000 Walkerton, Ontario, outbreak of gastroenteritis resulting from E. coli water con-tamination shocked the community. During this critical period, Dr. Clark applied his clinical expertise, track-record in research, and natural skill in collaborating with diverse groups to create a ground-breaking union between an academic research institution and the community who experienced a spike in mortality and morbidity. His work and commitment translated into direct patient care. He led a seven-year, community-based clinic in the town, assuring all patient health issues were documented with appropriate medical follow-up and attention.

“The body of literature created from the Walkerton Health Study will provide ongoing evidence of the need for screening to identify the health risks after such an outbreak and ways to prevent severe impacts through early treatment,” says Dr. Louise Moist, Professor of Medicine at the Schulich School of Medicine, University of Western Ontario. Currently, Dr. Clark is initiating a randomized control trial that will assess the role of increased water intake on slowing the progression of kidney function loss in patients suffering from chronic kidney disease.

The Kidney Foundation of Canada is partnering with the Canadian Institutes of Health Research on an important new research initiative focused on rare diseases. Fabry disease is a rare condition that affects many organ systems and results in a reduced life expectancy. Kidney complications in Fabry Disease are common and serious. The Fabry disease Clinical research and Therapeutics (FACTs) team will conduct a clinical research trial involving gene therapy, with the ultimate goal of establishing an effective treatment for the disease.

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S E R V I C E S

How can we help?

It’s the single most important question we ask. And the answers that we receive illustrate the scope of needs that keep us motivated to do more, and to do better.

People living with kidney failure are particularly challenged, frequently facing significant financial hardship related to loss of income, transportation and medication costs. In addition, dialysis treatment, the most common form of care for kidney failure, takes a great physical and psy-chological toll on the individual. Each year, we make life significantly easier for some 1,500 people across the country through our financial support program. The personal stories behind their burden compel us to find effective solutions that can positively impact their lives – sometimes, even save them.

One man contacted us when he had to be hospitalized for a knee amputation. He needed to have a ramp installed at home, but his limited income couldn’t cover the rising costs of his kidney disease. While he focused on getting the ramp, we stepped in to provide the transportation assistance to get him to and from his life-saving hemodialysis treatment.

In another instance, a new Canadian family found their infant’s life at stake. Just two years old, the child had been prescribed nutritional supplements to facilitate a gastrostomy feeding tube insertion that would help increase his weight. The supplements and procedure were critical for the child to be able to start life-saving dialysis treatment, but the family already didn’t have the financial means to address their essential needs. We filled the gap, providing financial support to access the supplements.

Sometimes the request for support only reaches us when the person experiences medical distress and needs special treatment. Other times the cry for help comes to us through social media, where those trapped by kidney disease turn to our Facebook page to break through the isolation. When they communicate with us through the online community, we work as a team to quickly respond and connect those in need with those best placed to help. In all cases, we work wholeheartedly to respond with care and appropriate support.

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C A M P S

From coast-to-coast, volunteers, donors and Branches of The Kidney Foundation of Canada have been offering support to people affected by kidney disease by facilitating access to vacation camps.

What’s it like to have a “regular” vacation?

“For many families this vacation is their first,” says Helen Walker, Administrative Coordinator at Lions Camp Dorset, which will celebrate 35 years in 2013. “The chance to dialyze in the morning and then canoe in the afternoon helps ease the stress of living

with chronic illness. The Kidney Foundation has been a strong supporter of Camp Dorset for over 30 years,” says Walker. The Ontario Branch of The Kidney Foundation contributes $200 for every dialysis patient attending camp. By doing so, the Camp can offer discounted accommo-dations, making vacation life financially accessible. It’s the chance for families to gather when they would otherwise not be able to. It’s also a chance for families to see they aren’t facing kidney disease alone.

The Kidney Foundation of Canada, BC Branch, Kidney Camp for Kids at Zajac Ranch is an event that grows year after year: 43 campers were supported in 2012. For one week in August, children referred by BC’s Children’s Hospital enjoy camp at Zajac Ranch for Children located just north of Mission, BC. Horseback riding, crafts, paddling, many other activities and great food are all part of the week-long adventure for these kids with special medical needs. The Kidney Foundation pays for the camping fees as well as travel costs for children each summer.

In Atlantic Canada, Winston Boone became a dedicated Kidney Foundation supporter after receiving a kidney transplant 18 years ago. He felt compelled to support the Kidney Camp for Kids at Nova Scotia’s Brigadoon Village. “When kids have to deal with their illness, they’re often not able to spend time with their peers,” he comments. “This will give them the opportunity to have fun and get their mind off their kidney disease.”

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R A I S I N G A W A R E N E S S

Kidney disease, particularly toward the end stage, is a huge burden and many people suffer in silence. We’re working together with members of the kidney community to change that, by providing platforms and venues for the diverse voices needing to be heard and the bold actions needing to be taken.

What is your Kidney Story of Hope?

The Kidney Stories of Hope campaign was born during Kidney Health Month, March in Canada. Celebrating its fourth consecutive year in 2012, this public awareness campaign, made possible through the support of Shire Canada Inc., invites Canadians to share their inspiring stories about how they have dealt with the challenges of living with kidney disease. Through these stories, others find the strength and inspiration to continue fighting.

In 1990, Sharron Shepstone had her right kidney removed and she lived well with one healthy kidney for nearly 15 years until cancer returned, on her left kidney. When her specialist told her she was going to die and no, that there were no clinical studies to help her, his “No” was not acceptable.

“I pushed for a second opinion,” says Sharron, whose left kidney was removed. “Dialysis was inevitable. I cried a lot, then decided that losing my kidneys was not going to jeopardize the rest of my life. I am inspired each day by the wonderful kidney patients that I meet. I am inspired by ME – that I continue to not take “NO” for an answer, and continue to live my life to its fullest. I am told that I inspire… So I take another breath - because I can. What matters is hope.” In 2012, Sharron was the Ontario recipient of the nation-wide Kidney Stories of Hope campaign, which annually honours 5 regional participants.

The Kidney Foundation inaugurated a collaboration with BestLifeRewarded® to raise awareness of kidney disease and what can be done to improve both early detection and prevention. Free to all Canadians, BestLifeRewarded® is the first of its kind health loyalty program offering healthy incentives for people for learning about and tracking healthy behaviours.

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R A I S I N G A W A R E N E S S

Why tell your story or take public action?

Each fall, Elizabeth Aquino and a team of family and friends take part in a Kidney Foundation of Canada awareness and fund raising Gift of Life Walk. “I walk for all kidney patients, to raise awareness about the improvements to dialysis and to honour those we have lost to the disease. It’s an opportunity for my family to help raise awareness about early detection and to support The Kidney Foundation and the work they do,” says Elizabeth.

Elizabeth is just one of the many dialysis patients who are not eligible for a kidney transplant and will rely on dialysis for the rest of their lives. A routine blood test when Elizabeth was 38 years old showed reduced kidney function. Three months later, through a kidney biopsy, she was diagnosed with multiple myeloma, which caused her kidneys to fail. She went on dialysis and was able to change from in-centre hemodialysis to home nocturnal dialysis, helping to improve her quality of life. “Chronic disease never goes away, so the goal for me is not a cure, it is adaptation and symptom management.”

Elizabeth, Sharron and thousands of other women, men and families across the country, take on a public role each year to give kidney disease a human face. They work with us to inspire others to honour their health and to work to improve the outlook and lives of those most affected by kidney disease.

THE KIDNEY FOUNDATION OF CANADA ANNUAL REPORT 2012 ORGAN DONATION PAGE 10


O R G A N D O N A T I O N

The 2012 report on organ donation by the Canadian Institute of Health Information showed that the gap is growing between the number of organs available for transplantation and the numbers waiting for this life-saving treatment. Kidneys are most needed. How can we increase the number of organs available for transplantation? The need for coordinated action to improve organ donation rates has been a longstanding position of The Kidney Foundation of Canada. So when Canadian Blood Services released its integrated, cost-shared Call to Action plan in 2012, which identified gaps in the organ and tissue donation and transplantation system and how to address them, The Kidney Foundation of Canada immedi-ately came out in support. We wrote Deputy Ministers of Health and Health Ministers across the country in support of the recommendations which could result in financial, administrative and process efficiencies that could ultimately save lives.

How can we better support organ donors and recipients? For people living with kidney failure, a kidney transplant often represents a gift of life, providing a significant improvement to their health and quality of life. Online discussion forums can help organ donors and recipients throughout the organ transplantation process by providing a private and unrestricted venue to exchange information on concerns and challenges experienced both before and after an organ transplant or donation.

ForDonorsOnly.com and ForRecipientsOnly.com were launched in 2012 through a unique and innovative alliance with an entrepreneur and kidney transplant recipient, Mr. Lawrence Geller. “The Kidney Foundation and I share a common interest in promoting organ donation and in making sure that community needs are met, so I am very pleased to help with the development of these discussion forums,” says Mr. Geller.

This initiative is the first phase in the development of a branded, private social network that will complement The Kidney Foundation’s KIDNEY CONNECT Peer Support program, a help line which matches people living with kidney disease with volunteers willing to share their own experiences.

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N E W C H A L L E N G E C A M P A I G N

What else could we do with more help?

In 2012, The Kidney Foundation launched the public phase of the New Challenge Campaign to raise $73 million to meet the needs of millions of Canadians who have kidney disease or are at increased risk of doing so.

During Kidney Health Month 2012, splashes of cobalt paint, the tinkling of glasses filled with sapphire-coloured cocktails, celebrities and Kidney Foundation supporters decked out in their finest cerulean garb filled the Art Gallery of Ontario for a Paint the Town Blue special event in support of the first nation-wide New Challenge Campaign.

The New Challenge Campaign will focus on four priorities:

• Kidney research, including KRESCENT, a training program for kidney research scientists • Kidney health, including prevention and early detection• Patient services, organ donation and public policy, and• Strengthening the Foundation’s capacity to continuously support kidney patients and their families.

Since 1964, The Kidney Foundation of Canada has assisted thousands of kidney patients through its individual support programs, and has contributed over $100 million to research initiatives. Today, the challenge continues as we break through limits to further impact lives. To date, the New Challenge Campaign has raised over 40% of target; and generous contributors continue to come forward to significantly lighten the load for those most in need.

THE KIDNEY FOUNDATION OF CANADA ANNUAL REPORT 2012 GIVING PAGE 12


G I V I N G

How can we make life easier for others? This is the critical question donors to The Kidney Foundation ask themselves when wanting to give. The range of answers, like the breadth of giving, impacts many lives.

INVESTING IN RAISING AWARENESS

July Dorland received a pre-emptive kidney transplant from her father when she was six years old and her kidneys were failing. In grade 1, she told her teacher and peers about her transplant. Three years later, at the end of 2012, when her teacher introduced her class to Project Give Back - an assignment that gets elementary children to organize a “FUNraiser” for a charity - July turned her attention to The Kidney Foundation. Using the recently launched Kidney Pages tool – webpages where you can fundraise in honour of a loved one or a Transplantiversary, she created a personal Transplant Anniversary page and set herself an ambitious $5,000 goal. Instead, she raised over $13,000!

She also took fundraising to the streets, making up a poster of her favourite drawings and going door-to-door to sell them. “She goes with a friend and makes me stand on the sidewalk,” says her mother who acknowledges that she, herself, was unable to talk about the transplant when July first announced it to her class at age 6. Children like July are investing in raising awareness and topics for discussion - such as kidney health and organ donation - that others might shy away from.

THE KIDNEY FOUNDATION OF CANADA ANNUAL REPORT 2012 GIVING PAGE 13


G I V I N G

INVESTING IN RESEARCH

John and Leslie Pearson have been long-time supporters of research at The Kidney Foundation of Canada through the National Direct Mail program. In 2012, they made the decision to make an even more meaningful gift to support kidney research.

Leslie shared that the Pearson family had gone through an exceptionally difficult and frightening experience when their son Christopher suffered kidney failure in the earliest years of his life. Christopher has since recovered and is preparing to enter his fourth year of civil engineering at McMaster University. As a result of their experience, the couple became acutely aware of the toll kidney disease takes on young patients and their families and the need for more research to understand the cause of childhood kidney disease. Because of her science training, Leslie was especially struck by the lack of knowledge surrounding the causes of nephrotic syndrome and how it can best be prevented or treated.

Over the past few years, the couple met with nephrologists and The Kidney Foundation staff to learn more about the peer-reviewed granting process and the state of research, exploring how they could make a contribution that would have significant impact.

In the Fall of 2012, they confirmed a pledge of $250,000 over 5 years to support two research awards in the area of nephrotic syndrome, one of the largest multi-year com-mitments made to date to support The Kidney Foundation and its New Challenge Campaign.

INVESTING IN EARLY DETECTION AND PREVENTION

Canadian National Railway Company (CN) innovatively committed $600,000 to The Kidney Foundation of Canada for the launch of a Chronic Kidney Disease (CKD) or SeeKD targeted screening initiative. The project is national in scope and aims to identify people who may have Chronic Kidney Disease (CKD). The funds generated by the sale of the scrapped metal of CN cars was used to fund this project, which promotes self-management behaviours to prevent or delay progression of CKD. The program also generates an evidence base which can be used to inform public policy initiatives for prevention, early detection and management of disease. To date, nearly 100 screening events have been held throughout the country and data has been collected for over 3,000 individuals.

THE KIDNEY FOUNDATION OF CANADA ANNUAL REPORT 2012 LEADERSHIP PAGE 14


L E A D E R S H I P

National PresidentDr. Julian Midgley

Immediate Past PresidentKathryn Richardson

TreasurerBrad R. Crawford

Secretary Tetiana M. Gerych

Vice-PresidentAndrew MacRitchie

DirectorsFaye Clark, President, Atlantic Canada BranchChristopher Gobeil, President, Quebec BranchDr. Morrison Hurley, President, British Columbia BranchJason Kroft, Director-at-LargeGuy Langlois, Director-at-LargeKen Mylrea, Director-at-Large Gordon Read, President, Northern Alberta andThe Territories BranchDavid Stack, President, Saskatchewan BranchHarvey Thomson, Director-at-LargeHelene Weir, President, Southern Alberta BranchTerry Young, President, Ontario BranchDr. James Zacharias, President, Manitoba Branch

NATIoNAl BoArD oF DIreCTorS

PAST PreSIDeNTS

2009 - 12: Kathryn Richardson, ON2006 - 09: Niloufer Bhesania, ON 2004 - 06: Patrice Waché, QC2001 - 04: Peter Davis, ON1999 - 01: Mary Lou Karley, ON1997 - 99: Marcia Bell, BC1995 - 97: Owen B. Brown, NL1993 - 95: Vivian Doyle-Kelly, QC1991 - 93: Mary Catharine McDonnell, NS1989 - 91: Neil Bronsch, AB1988 - 89: Alfred Coll, ON1986 - 88: Doris Norman, NB1985 - 86: Kenneth R. Hughes, MB1983 - 85: Howard McNutt, NS1981 - 83: Barry S. Arbus, ON1979 - 81: Stephen A. Stein, ON1977 - 79: Ben Vanden Brink, AB1976 - 77: David Ornstein, QC1974 - 76: Roger P. Kerans, AB1970 - 74: Harold Ashenmil, QC1964 - 70: Arthur Boidman, QC 1st row, left to right: Brad Crawford, Kathryn Richardson,

Dr. Julian Midgley, David Stack. 2nd row, left to right: Dr. Morrison Hurley, Guy Langlois,Andrew MacRitchie. 3rd row, left to right: Gordon Read, Jason Kroft, Faye Clark, Dr. James Zacharias 4th row, left to right: Helene Weir, Tetiana Gerych,Christopher Gobeil 5th row, left to right: Terry Young, Ken Mylrea, Harvey Thomson

THE KIDNEY FOUNDATION OF CANADA ANNUAL REPORT 2012 CONTACTS PAGE 15


C O N T A C T S

National office300-5165 Sherbrooke Street WestMontreal, QC H4A 1T6514-369-4806 / 1-800-361-7494Paul Shay, National Executive Director

British Columbia Branch4940 Canada Way, Suite 200Burnaby, BC V5G 4K6604-736-9775 / 1-800-567-8112Karen Philp, Executive Director

Northern Alberta and The Territories Branch 202-11227 Jasper AvenueEdmonton, AB T5K 0L5780-451-6900/ 1-800-461-9063 Flavia Robles, Executive Director

Southern Alberta Branch6007 1A Street SWCalgary, AB T2H 0G5403-255-6108 / 1-800-268-1177Joyce Van Deurzen, Executive Director

Saskatchewan Branch 1-2217 Hanselman Court Saskatoon, SK S7L 6A8306-664-8588 / 1-888-664-8588Joyce Van Deurzen, Executive Director

Manitoba Branch Unit 1 - 452 Dovercourt DriveWinnipeg, MB R3Y 1G4204-989-0800 / 1-800-729-7176Valerie Dunphy, Executive Director

ontario Branch 1599 Hurontario Street, Suite 201Mississauga, ON L5G 4S1905-278-3003 / 1-800-387-4474Jim O’Brien, Executive Director

Quebec Branch 2300 René-Lévesque Blvd. WestMontreal, QC H3H 2R5514-938-4515 / 1-800-565-4515Martin Munger, Executive Director

Atlantic Canada Branch56 Avonlea Court, Suite 204Fredericton, NB E3C 1N8506-453-0533 / 1-877-453-0533Tracy Durkee-Jones, Executive Director

NATIoNAl AND BrANCH oFFICeS

kfoc 2012 annual report

Documents

burden of kidney disease

risk of kidney disease

kidney cancer survivors

enhancement of kidney

kidney cancer research

world kidney day

entire kidney community

fabry disease