Education

Support

Research

Winter 2013

Aplastic Anemia & Myelodysplasia Association of Canada

N E W S L E T T E RPresident’s Message

Education Day 2013 was held on October 19. We were very excited to hold this year’s meeting in Montreal, our first education day in Quebec. Thanks to the speakers who gave their time to present and to Celgene Corporation, Alexion Pharma Canada, and Novartis for their generous financial support the day was a big success. Over 80 people attended and the presentations by experts were excellent. This was the first event at which we had simultaneous translation; congratulations to the translators and thank you to the Canadian Hemophilia Society for recommending them because they were flawless. There were many new faces and the surveys showed a high level of satisfaction with the event. Patients, as always, obviously enjoyed meeting and speaking to others who have a similar disease. One lady who has MDS commented “you have given me hope” to another also with MDS. Most of the presentations are available on our website (www.aamac.ca/presentations.html).

The Board of Directors was elected unanimously at the Annual General Meeting held on the same day. Two new directors were elected: Melanie Anderson from Alberta, and Jennifer Garvey, from Nova Scotia. Melanie brings her expertise as a Nurse Practitioner at the Tom Baker Cancer Centre in Calgary and is a past recipient of the Liz Lemire Memorial Nursing Scholarship sponsored by AAMAC. Jennifer brings her valuble experience as a transplant recipient. There were three resignations, Anna Chamrai, Ron Pond, and Lisa Ross. We thank them for their time and dedication. As mentioned previously, although Anna has resigned from the Board, she has volunteered to continue as our Treasurer for which we thank her greatly.

Canada has a new Not-for-profit Corporations Act (NFP Act). AAMAC currently operates under the Canada Corporations Act which the NFP Act replaces. In order to continue to operate AAMAC must file “Articles of Continuance” which must be approved by Industry Canada before October 14, 2014. Ron Pond undertook to work with a lawyer on preparing these. While a lot of work, the preparation gives us an opportunity to update our lists and replace a number of by-laws with just one. If you are on our mailing list, you will be receiving information in 2014 about membership in AAMAC as we work to comply with the new legislation.

2014 is already shaping up to be an exciting and busy year. We are pleased to focus on the pediatric community with two planned Pediatric and Parent Meetings: the first in Vancouver in April and the second in Toronto in October (see News of Note for details). In addition, we will be hosting a new support meeting in Sault Ste. Marie in May and, tentatively, one in Saskatoon at a time to be determined. Finally, our annual national Education Day is scheduled for October 4th in Edmonton.

Once again, in the last Newsletter of the year, I would like to wish you all a safe and healthy holiday season and best wishes for the New Year.

Pam Wishart

The Aplastic Anemia and Myelodysplasia Association of Canada (AAMAC): provides information about aplastic anemia, myelodysplasia and PNH to the public; operates a nationwide support network for patients, families and medical professionals; supports Canadian Blood Services blood programs and OneMatch Stem Cell and Marrow Network; and raises funds for medical research.

BOARD OF DIRECTORS 2013/2014

Melanie Anderson Rolla Bahsous, Newsletter Editor

Gwen Barry, Secretary Janice Cook

Jennifer Garvey Michelle Joseph, Vice President

Silvia Marchesin Pam Wishart, President

Anna Chamrai, Treasurer (Officer)

MEDICAL AND SCIENTIFIC ADVISORY COMMITTEE

Dr. S. Couban Dr. Y. Dror

Dr. L. Larratt Dr. K. Schultz

Dr. R. Wells, Chair

CHAPTER CO-ORDINATORS

Janice Cook, BC Gwen Berry, Atlantic

Catherine Knoll, Ottawa

STAFF

Cindy Anthony, Executive Director Lois Henderson, Admin Assistant

The Aplastic Anemia & Myelodysplasia Association of Canada newsletter is published 4 times a year. The contents are not intended to provide medical advice, which should be obtained from a qualified health professional. No part of this publication may be used or reprinted without written permission. For submissions, inquiries or comments, please contact us at:

Aplastic Anemia and Myelodysplasia Association of Canada

11181 Yonge Street, Suite 321 Richmond Hill Ontario L4S 1L2

(905) 780-0698 or 1 (888) 840-0039

info@aamac.ca. www.aamac.ca

Charitable Registration Number 87557 2265 RR0001

BC Chapter Update

By Janice Cook

I hope that you had a chance to go outside and enjoy the glorious fall weather that we have had.

We certainly did not enjoy glorious weather the day we held our last support group meeting in Vancouver. It was pouring outside, and warm and humid inside our somewhat overcrowded room at CBS that afternoon. Due to a communication and scheduling glitch we had to make some last minute changes in our plans and we thank all of the attendees for being patient and understanding. (Special thanks to Deanna for knowing which button to push.) I think every one of the 22 who attended will agree that it was worth coming out to hear Dr. Heather Leitch speak about iron overload as it pertains to bone marrow failure patients. She also told us about research and developments in MDS treatments. We are very grateful to have her take time to speak with us on a weekend off! We met a number of new patients and family members at this meeting and with six others unable to attend at the last minute, we know that people want to meet other patients and to listen to knowledgeable doctors.

Dr. Leitch also spoke about a clinical trial for low risk MDS patients that is currently registering Canadian patients. As well as her, there are two Ontario hematologists participating in this trial. This is a small trial and may be filled at the mailing of this newsletter but if you are interested information is posted on www.aamac.ca.

Remember that cold and flu season is upon us once again and it is time to ask you doctor if a flu shot is something you should receive this year.

Take care and please contact me at bc@aamac.ca if you would like any information about our chapter.

Alberta Chapter

Update By Silvia Marchesin

The Alberta Chapter had another successful meeting on October 7. I provided an overview of AAMAC and some of the work we do across the country. We then had an excellent discussion with patients and family members asking questions, and sharing stories and tips for coping with bone marrow failure.

Thank you to Wendy Robutka and Kayla Killoran who have stepped up to plan future meetings. We are considering what topics to focus on during the next two meetings. If you have any ideas for presenters, or topics that you would like to have at the meetings, please feel free to contact Cindy at the national office (info@aamac.ca, 1-888-840-0039).

Thank you also to Connie and Larry Sopiwnyk, and Renate and Bill Gryba for offering to greet people and to bring snacks for the upcoming meetings. We welcome any patient, family member, friend, or health care provider to our upcoming meetings currently planned for Thursday, January 9, 2014 and Monday, April 7, 2014 from 7-8:30pm. The exact location is still to be determined so please check the website, www.aamac.ca, for that information.

Atlantic Chapter

UpdateBy Gwen Barry

An extensive review of Atlantic Region’s contact list of AA/MDS/PNH patients and support persons was conducted by several Atlantic Chapter members, by phone and by email, over the course of August and September. The purpose was to confirm the currency and validity of the list as it relates to interest in being involved in, or kept informed of AAMAC events, and educational material. As a result, the

list for the four Atlantic provinces now includes 24 MDS patients, 11 AA patients, 7 PNH patients, and 29 family members and other support persons. This is not necessarily indicative of the number of patients with each disease in Atlantic Canada. Rather, it includes only those who have approached AAMAC seeking support, and/or educational material.

August and September also saw the group preparing for the first ever AAMAC Regional Education Day. It was sponsored by Alexion and Celgene, and was hosted by Atlantic Chapter on September 28, 2013 at the Atlantica Hotel in Halifax. Display tables were set up by Alexion, Canadian Blood Services – OneMatch, Leukemia and Lymphoma Society and AAMAC. In attendance were eight patients/support persons from the island of Newfoundland, four from New Brunswick, and 24 from Nova Scotia -including from the Halifax area, West Pubnico, Barney’s River, Tatamagouche, Antigonish, Maitland and Cape Breton. The majority in attendance live a long distance from Halifax, and were taking advantage of AAMAC travel bursaries to attend their first Education Day.

All were appreciative of the valuable information obtained from the guest speakers about stem cell transplants, iron overload, coping with serious illness and accessing expensive drugs. Also evident was the benefit, for some, of meeting another person with the same disease for the very first time, and now having someone to talk to from time to time.

Two representatives from the Atlantic Chapter attended Education Day in Montreal on October 19. Jennifer Garvey of Atlantic Chapter was voted onto the Board of Directors at the Annual General Meeting in Montreal.

This gives Atlantic Chapter two representatives on the National Board.

The family of the late Dr. Robert MacDonald, former Atlantic Chapter Coordinator and a past member of

AAMAC’s Board of Directors, organized a fundraiser in Robert’s name, titled “Dr. Bob’s Memorial Wine Tour.” Further details can be found in this issue of the newsletter.

Ontario Chapter

Update

Ottawa and Toronto Updates By Cindy Anthony

The Toronto Support Group meeting

scheduled for November 23rd

will be

rescheduled for early 2014. Watch

the website and Facebook pages for

updates.

Quebec

UpdateBy Cindy Anthony

Please join us on Saturday, February 22, 2014 from 9:30 a.m. to noon at the Hôtel de l’Institut, 3535, rue Saint-Denis. Christiane Caza is a social worker with CMR Centre de Readaptation de la Monteregie in Chateauguay. Three years ago her son was diagnosed with PNH and aplastic anemia. Christiane will give a presentation about how aplastic anemia, MDS and PNH not only affects the person who has the disease but also affects the entire family. She will discuss the importance of understanding how the patient experiences their illness and how to cope with it and how important it is for caregivers to get information about the disease and training to cope with different situations that may arise during the course of their loved one’s treatment. The presentation will be given in French.

We will also be discussing upcoming meetings in Quebec.

A light breakfast will be served. Please R.S.V.P. 1 (888) 840-0039 or info@aamac.ca.

Education Day 2013

Montreal, QuebecBy Cindy Anthony

Education Day this year was held for the first time in Quebec. A total of 85 participants attended and heard some excellent speakers and were able to meet with other patients and families. Thank you to the following speakers for sharing their time and expertise at the conference: Dr. John Storring, Dr. Lea Bernard, Dr. Thomas Kiss, Dr. A Shamy and Kristen Beausoeil from Health Canada.

In addition, we thank Pam Wishart, Michelle Joseph and Gord Manuel for sharing their patient experiences with us.

We also thank Orphanet and Héma-Québec for sharing displays and resources about their organizations. We could not provide Patient Education Days without the generous support of our sponsors: Celgene, Alexion and Novartis.

Caroline Laughlin accepting the TEAM award on behalf of CORD. In the background, Allan Patt of Celgene Inc. and Pam Wishart, President of AAMAC.

The TEAM AWARD was also presented during Education Day. The TEAM AWARD was established by Celgene Corporation in 2009, The Excellence in Advocacy Medal’s purpose is to recognize an individual or group that has contributed significantly to advocacy efforts, improved care, treatment options or improved access to care and treatment options on behalf of bone marrow failure patients. The award includes a $5000 donation to AAMAC. This year the award was presented to the Canadian Organization for Rare Disorders (CORD) for many years of

advocating for an orphan drug policy in Canada. Thanks in part to CORD’s ongoing efforts, this year a draft regulation has been put in place and will soon be made public. Canada should have a framework within a year, which is a very significant achievement. We wanted to recognize this milestone and the difference it will make in the lives of patients who are dealing with bone marrow failure disease, and indeed any rare disorder.

We were so pleased to have volunteers step forward to start an AAMAC Chapter in Quebec. The first meeting will be on Saturday, February 22 at 9:30 a.m. at the Hôtel de l’Institut, 3535, rue Saint-Denis, Montréal. Christiane Caza, a social worker and parent of a son with Aplastic Anemia will speak on coping strategies for patients and their families. We will also discuss ongoing meetings for this group.

International

PNH RegistryBy Silvia Marchesin

The International PNH Registry is a global, observational, non-interventional study collecting safety, effectiveness and quality of life data on PNH. It is sponsored by Alexion Pharmaceuticals.

One of the important characteristics of comprehensive care is a patient registry. With a rare disease such as PNH, an international registry is essential to getting enough data to be meaningful.

The data collected by the Registry is analyzed by a collaborative scientific board chaired by Professor Peter Hillmen (hematologist, Leeds Teaching Hospitals, England).

The ultimate goal of the PNH Registry is to increase medical understanding and knowledge about PNH and provide information that will help facilitate diagnosis and optimize treatment of PNH patients.

If you are a patient with PNH, talk to

your hematologist about enrolling in the International PNH Registry. All patients who have been diagnosed with PNH or have evidence of a positive PNH clone are eligible to enroll. Also, all physicians managing patients with PNH, regardless of therapy, can enroll patients in the registry. The benefits of your participation include:

• enhancing the understanding ofPNH disease, diagnosis andtreatment,

• capturing the long-term outcomesof patients in order to better guideand assess treatments, and thesafety of the medication Soliris®,and

• expanding a robust, internationaldatabase on PNH for scientificexchange and publications.

To date, over 1,800 patients have been enrolled globally. These include patients from the United States, Canada, Argentina, Denmark, the Netherlands, the United Kingdom, Belgium, France, Germany, Spain, Switzerland, Finland, Sweden, Australia, New Zealand and Taiwan.

Thank you to Dr. Thomas Kiss for including this information about the registry as part of his presentation at AAMAC’s Education Day in October.

For more information on the Registry, visit: pnhsource.com/pnh-registry.

Two Public Cord

Blood Banks Now in

Canada!By Pam Wishart

Canada now has two public cord blood banks – one run by Héma-Québec (H-Q), established in 2004, and one run by Canadian Blood Services (CBS) which opened its doors on September 30 of this year.

Cord blood is the blood contained in the umbilical cord and is collected after delivery. The stem cells collected from it are used for transplantation. These stem cells are particularly useful because they are so immature and an

incomplete match is less likely to cause serious side effects.

In Quebec cord blood can be donated at several hospitals in Montreal, Laval and Quebec City, while in the rest of the country, cord blood can only be donated at two campuses of the Ottawa General Hospital. However, the CBS program is expected to be available in Brampton, Edmonton and Vancouver by mid-2014.

For those of you interested in history, the first successful cord blood transplant was carried out in 1988 in France by Dr. Éliane Gluckman on a child suffering from Fanconi Anemia (Information Guide and Registration, Héma-Québec Public Cord Blood Bank).

In particular demand are cord blood donations from First Nation’s people and those with parents from different ethnicities. These patients who face a particular challenge in finding a match.

If you are pregnant and live near a hospital where donations can be made, consider a donation and for the rest of you, please spread the word. A cord blood donation may cure someone with bone marrow failure.

Canadian Nurses

Foundation

Scholarship

Recipient: Kia Duthie

(Editor’s Note: Text from the Canadian Nurses’ Foundation Website)

AAMAC is pleased that Kia Duthie has received a Canadian Nurses

Scholarship which AAMAC is a contributer to.

Kia Duthie is currently entering her third year of the three-year direct-entry Master’s in Nursing program at McGill University. Prior to starting this program, Kia spent many years in the area of cell and molecular biology and cancer research. While she loved being in research, she came to realize she wanted to do something closer to her central interests in health care and working with people. Kia chose nursing because she wanted a challenging, diverse career that provided the opportunity to make a difference in people lives everyday.

During student clinical rotations, Kia had the opportunity to work on a hematology and oncology floor. She really enjoyed working in this area as she felt it is an incredibly dynamic, challenging, and rapidly advancing field. There is so much to learn and many different opportunities for counseling, education, and collaboration with patients and families. To learn more about this field of nursing, Kia chose her master’s research project in the field of oncology, exploring how living with cancer influences people’s experience with the health care system.

After graduating, Kia plans to continue in the area of hematology/oncology nursing and work to become an advanced practice nurse in the hopes of contributing to the future of cancer health care through leadership roles, teaching and research.

Through this work Kia also hopes to help identify concrete and innovative ways to advance the field of nursing.

Dr. Bob’s Memorial

Wine TourBy Dolores d’Entremont

The family of the late Dr. Robert MacDonald, former long-time member of AAMAC’s Board of

Directors and Coordinator of the Atlantic Chapter, organized a fundraiser in Robert’s name, titled “Dr. Bob’s Memorial Wine Tour.” It was held on October 26, 2013 in the Annapolis Valley of Nova Scotia.

The group visited Grand Pré Winery, followed by lunch at Luckett Vineyards, where the wine-tasting was held outdoors overlooking the Blomidon Hills, farmlands and the sea, followed by a tour of Avondale Sky Winery.

The late Robert’s wife Jackie, and children Allana (and husband Bob Mills), Michael MacDonald, and Kara (and husband Danny Bursey) recruited a busload of patients, family and friends for the event. While daughter Roberta had to be in Los Angeles on business, she was with the wine tour in spirit. Michael acted as MC and tour guide.

A raffle was held for a case of wine donated to Kara for the purpose, as well as two other bottles donated by Linda O’Brien.

The patients who participated in the event took the opportunity to provide some education on AA, MDS, and PNH to the group. Jackie prepared packages for each person on the tour, which included AAMAC pamphlets, bracelets, and pens, and

treats. Several members of the group

spoke briefly on their particular disease and on how appreciative they were for the support of AAMAC, and of the late Robert MacDonald over the years, including Linda O’Brien (MDS and a double lung transplant), and me, Dolores d’Entremont (AA/PNH). Jennifer Garvey (AA) was introduced to the group as a new member of AAMAC’s Board of Directors.

A bonus, not planned on as part of the event, was the lifting of spirits that occurred for others on the tour with serious illnesses, after hearing the experiences of these AAMAC patients.

Indeed, it turns out that an AA family on the tour, previously unknown to AAMAC, has expressed an interest in being informed of any future AAMAC events and education opportunities. The family includes a retired registered nurse.

Everyone on the tour managed to connect in some way, which made for a very interesting and fun day. The proceeds from the tour, after expenses, raised by the MacDonald family will go to AAMAC.

Dr. Bob’s Crew

NOTICE OF SPECIAL GENERAL MEETING OF

MEMBERS

WHEN: Saturday, January 11, 2014 at 2 p.m.

WHERE: Canadian Blood Services Room – Div A/B – 4th Floor 67 College Street Toronto, ON

R.S.V.P. 1-888-840-0039 info@aamac.ca

This is a Special General Meeting to vote on the new bylaws required to comply with new legislation, the Canada Not-for-profit Corporations Act, S.C. 2009, c. 23.

A copy of proposed bylaws can be obtained by contacting Cindy using the RSVP information given above.

AAMAC Charity Golf

TournamentBy Joseph MacDonald

Over the last 17 years a golf tournament has been held at a small golf course located in Western Ontario.

This charity tournament is limited to a special group of retired police officers and friends of the police. The tournament usually attracts between 50 and 60 golfers and several non-golfers. Almost all of the retired police officers who attend, have worked at one time or another in the criminal intelligence field of policing, and therefore were active in the ongoing fight against organized crime.

The tournament was the brain child of Terry Hall who is a retired Ontario Provincial Police CIB Inspector. The first few years it was more of a social event that developed into both a charity event and social function. Over the years different charities have benefited from the money raised.

I am an MDS patient and also a long-time friend of Terry Hall. Two years ago I asked Terry to make AAMAC the organization that would benefit from this fund raising tournament that year. He was quick to agree. Over the last two years, the tournaments have raised approximately $6,000 for AAMAC.

The goal is to hold the tournament once more in 2014 and again AAMAC will be the sole beneficiary.

Although Terry Hall is the driving force behind the success of the tournament, he is aided by a few corporate sponsors and retired police officers who donate prizes, time and money to help ensure success. I am certain that I can speak for all those associated with AAMAC, when I extend to Terry Hall our collective gratitude and wish him well long into the future.

Mark Your Calendars

Montreal Support Group Meeting, Saturday, February 22, 2014 9:30 a.m. to noon at the Hôtel de l’Institut, 3535, rue Saint-Denis. See Quebec Chapter update for more information.

Kitchener-Waterloo Support Group Meeting, Tuesday January 14, 2014. 6:30 to 8:30 p.m. The meeting will be held at Family Centre, 65 Hanson Avenue, Kitchener. Kathryn Graham (Social Worker Grand River Regional Cancer Centre) will be the guest speaker that evening. She will speak about how patients and families can learn coping strategies for managing their disease. RSVP to info@aamac.ca or call 1 (888) 840-0039. We will also discuss the group’s ideas for moving forward with upcoming meetings.

Sault Ste. Marie Patient Meeting, Saturday, May 31, 2014. More details will be available in the new year.

Watch for updates on the website and in our next newsletter.

Ottawa Patient Support Group Meeting, Wednesday, December 11 from 6 to 8 p.m., Maplesoft Centre, 1500 Alta Vista Drive at the corner of Industrial Avenue. For further information call the AAMAC office at 1 (888) 840-0039 (toll free) or contact Catherine Knoll at asi@sympatico.ca.

Alberta Chapter Support Group Meeting, Thursday, January 9 at 7 p.m. The location is yet to be determined. Please check our website for further details. All patients, families, and health professionals are welcome.

Pediatric Patient and Parent Meetings

Vancouver, Saturday, April 12, 2014. Registration and more information to follow. Please check our website and the next newsletter for more information.

Toronto – October 2014. More details to follow.

Patient Education Day in Edmonton October 4, 2014

We are happy to announce that we will be holding our next annual Patient Education Day in Edmonton, Alberta next year! Stay tuned for more details.

News of Note

Dog walk raises funds for aplastic anemia research!

AAMAC would like to thank Brittni Timothy for organizing a successful dog walk to raise money and awareness for aplastic anemia.

Brittni, who lives in Calgary, was diagnosed with aplastic anemia four years ago.

Last year Brittni decided she’d start running an annual fundraiser to raise

Canadian PNH Network By Silvia Marchesin

AAMAC is very excited to let our members know about this important new development in the care of Canadian PNH patients.

There is a new Network in Canada that is bringing together experts to provide better care to PNH patients. At AAMAC’s Education Day in October, Dr. Thomas Kiss of the Maisonneuve-Rosemont Hospital in Montreal included information about the Network in his presentation. Most of this article is based on his notes.

The Canadian PNH Network’s vision is: Patients in Canada must receive world-leading care that extends over case recognition, diagnosis and treatment follow-up.

The Network is made up of a) hematologists with established benign hematology programs, and b) oncologists with established programs in bone marrow failure. All of these doctors have experience in PNH diagnosis, PNH assessment, and treatment and follow-up (including experience with eculizumab (Soliris®).

The Network works using a “Shared Care” approach that allows the patient to remain with the referring physician, while benefitting from access to specialized PNH services. Typically, the referring physician (usually a family doctor) refers you to a PNH Referral Centre. The Centre provides specialized PNH services (eg. diagnosis) and reports back to the referring physician. It also provides biannual or more frequent follow-up, depending on need. Once again, reports are sent back to the referring physician.

There are currently ten PNH Referral Centres of Excellence in Canada. They are:

City Site Physician

Vancouver, BC Vancouver General Hospital Dr. Thomas Nevill

Edmonton, AB University of Alberta Hospital Dr. Loree Larratt

Calgary, AB Foothills Medical Centre Dr. Karen Valentine

London, ON London Health Sciences Centre Dr. Ian Chin-Yee

Hamilton, ON McMaster University Medical Centre Dr. Brian Leber

Toronto, ON Sunnybrook Health Sciences Centre Dr. Richard Wells

Montreal, QC Jewish General Hospital Dr. Stephen Caplan

Quebec City, QC CHUQ - Hôtel-Dieu de Québec Dr. Danielle Marceau

Halifax, NS Queen Elizabeth II Health Sciences Centre Dr. Sue Robinson

St. John’s, NL The General Hospital Dr. Kuljit Grewal

The Canadian PNH Network’s mission is: 1. To maintain the highest standard of clinical practice in the management of PNH,2. To provide continuing health education on the evolving management of PNH

patients, and3. To participate in the PNH registry to gain further understanding of the natural

history of PNH. (More information about the PNH Registry can be found inanother article in this newsletter.)

In a nutshell, the Network will provide “Excellence in PNH Education and Care.”

money for research by selling Livestrong bracelets.

This year, Brittni organized a walk on Sunday September 22nd from 11am to 1pm at a local park in Calgary. Being a dog lover, she had participants bring their dogs along for the fun walk.

Congratulations and a big thank you to Brittni and participants of the walk!

Dance for Life a success! By Lisa Ross

Dance for Life was held on November 16 and was a great night! Everyone who came said that they had so much fun, and it was like a house party, where everyone knew each other. My friends and family are amazing and they all came out to show their support. We had so many incredible prizes to give away. DJ Rockin Robin had everyone on the dance floor with his awesome music. Bev, Liz, Pam, Sue, Shawn and Doug all helped out with the door and the ticket sales, and they did an amazing job! We raised $2,010! Thanks to everyone who helped and attended!

Got any recipes to share? A member from the AAMAC community, Anita, is putting a cookbook together to raise some funds for AAMAC. If you have any recipes you’d like to share, please email her at ahuinink@cogeco.ca. You are also welcome to include information about your journey with bone marrow failure diseases.

Patient trackers available. Patient trackers are produced each year in both English and French with the generous support of Celgene and Novartis. This resource assists patients in tracking their medical information and appointments. If you would like one sent to you please contact us. info@aamac.ca or call 1 (888) 840-0039.

Newsletters available electronically. If you would like to receive the newsletter electronically, please email us at info@aamac.ca or call 1 (888) 840-0039.