In 2019, PDSA gained not-for-profit status in Canada and is committed to providing support and education to Canadian ITP patients and their families. We are also committed to providing Canadian health care providers with up-to-date current medical management guidelines and practices for caring for ITP patients.
Canadian ITP Patient Support & Engagement
ITP Patient Connect: Canadian Support Groups
PDSA has an active support group program for ITP patients and caregivers across the United States and Canada. There are five Canadian support groups and one Canadian Teleconference group. Find meeting locations and dates by selecting the button below:
Patient Stories and Videos
Read a collection of stories about Canadian ITP Patients featured in our quarterly publication, The Platelet News, and view recorded personal stories of Canadian ITP patients, their families, and those who treat them.
The Platelet News is a special quarterly publication, and is an exclusive benefit of PDSA membership. Become a PDSA member to receive The Platelet News and access other exclusive member benefits.
Regional Meeting on ITP
Regional Meetings in Canada are a way to bring Canadian patients and providers together for a day of learning and sharing. They are also a great way to meet other ITP patients and families in Canada and hear about updates in research and innovative treatments for patients with ITP.
Sunday, September 24th
10:00 a.m. to 3:00 p.m.
Ivey Spencer Leadership Centre
551 Windermere Road
INFO & REGISTRATION
Awareness and Fundraising Activities
Fundraising at PDSA
PDSA’s efforts are strengthened by the generosity of private donations, memberships, grant funding, and individual fundraising efforts organized by dedicated volunteers who engage their local communities, family, friends and colleagues in amazing grassroots events. Are you interested in learning more about hosting a fundraiser?
Previous Fundraising Events in Canada
In memory and honor of Luca DiRaimo, an ITP warrior who lost his life due to ITP but will never be forgotten, the first Canadian Pump It Up For Platelets! event was created in 2019. Since then, this event has been an annual tradition to honor all ITP warriors and to raise valuable funds to allow PDSA to continue to support ITP patients and their families. Canadian families are welcome to join the event or start their own Pump It Up For Platelets! events in their hometown.
Light it up for platelets!
To create awareness globally for ITP, and our Sport Purple for Platelets Day which is recognized as the last Friday of September, which is ITP Awareness Month (a month dedicated globally for ITP awareness), Canadians are encouraged to look into how they can encourage their town to light up monuments in support of ITP. For the last two years, the CN tower in Toronto, ON, Canada has turned purple on the last Friday in September to support individuals and families living with ITP.
Canadian ITP Resources
Educational Booklets (Free)
Who Pays for Drugs in Canada?
Additional Resources in English
Additional Resources in French
Vanishing Platelets: Issues Canadian ITP Patients Face
In the following series, Hematologists from McMaster University in Ontario, Canada, explain the multiple variables confronted by Canadian ITP patients with chronic disease and the balancing act of treating not just numbers, but also the patient's unique symptoms and circumstances.
Diagnosis of Exclusion
Spectrum of Severity
ITP News in Canada
Government of Canada improves access to affordable and effective drugs for rare diseases
Quebec just became the first province in Canada to have an official rare disease strategy in place
Securing Canada’s Immunoglobulin Supply – Canadian Blood Services
Meet the Canadian doctors working to identify and treat the rare blood clots linked to COVID-19 vaccines, including PDSA Medical Advisor Donald Arnold, MD
Sport Purple for Platelets Day added to Canada's official list of Health Promotion Days
Second-Line Therapy Access Issues for Canadian ITP Patients
PDSA Canada Advocacy in Action
One of the biggest issues Canadian ITP patients and their families face is gaining access to the most appropriate ITP therapies, particularly with regards to second-line therapies. Currently, within most provinces, you need to have a splenectomy before you can access non-surgical medicines to treat ITP, in addition to showing a failed or inadequate response to available first-line therapies such as corticosteroids, IVIG, and Anti-D (Win-Rho®).
Access to the most appropriate ITP therapy has often relied on having private drug coverage or the financial means to pay for treatment as opposed to relying on provincially funded drug plans. Public drug plans compare the cost and benefits of a new therapy with the cost and benefit of the older therapies, and this comparison often works against rare disease drugs, especially when the current therapies are older, generic, and/or just for symptom management. Furthermore, cost varies across all provinces in Canada compounding the inequities.
Select the button below to learn more about what ITP therapies are available.
The Process of Drug Reimbursement for New Therapies in Canada
What has PDSA been doing in terms of Canadian Advocacy?
MOH Call for Action (2019)
On November 20, 2019, PDSA wrote a letter to the Ministry of Health, Honorable Christine Elliot, and her appropriate team members explaining the urgent need for Canadians to have prompt and appropriate access, based on professional medical guidelines. This call for immediate action was for the Ministry of Health (MOH) to make changes to allow ITP patients to have better access to second-line therapies.
This eventually led to the Canadian Drug and Technology Agency (CADTH) initiating a treatment review of the current algorithm for how ITP therapies can be accessed and paid for through provincial health insurance. PDSA, a patient stakeholder, alongside a dedicated group of Canadian hematologists, has participated in several CADTH reviews, some of which are still ongoing.
PDSA’s 2019 letter to the Ministry of Health
Projects with CADTH that PDSA has had a voice in:
Project Proposal – ITP Second-Line Therapy Treatment for Adults with ITP (2020)
Purpose: To determine if the current processes for accessing second-line therapies in Canada should be reviewed.
Initiated: January 2020
Approved: January 2021
Therapeutic Review – ITP Second-Line Therapy Treatment Algorithm for Adults (2021)
Purpose: To determine if the current processes for accessing second-line therapies in Canada should be updated.
Initiated: January 2021
View PDSA’s 2021 letter of support to CADTH.
Fostamatinib (aka Tavalisse®)
Purpose: To determine if fostamatinib should be covered under public drug plans
Initiated: August 2021
Final outcome: April 2022 - CADTH issued a draft recommendation to not reimburse fostamatinib. To learn why please click on the title to view document.
Avatrombopag (aka Doptelet®)
Purpose: To determine if avatrombopag should be covered under provincial drug plans
Initiated: February 2022
Review on hold
Review of CADTH’s Real World Evidence Guidance for Rare Disorders
Purpose: To review CADTH’s proposed guide for evaluating treatments for rare diseases
Initiated: December 2022
Advocacy work with our Partners!
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.
PDSA participated in a rally against proposed changes to the PMPRB with CORD!
The Patented Medicines Prices Review Board (PMPRB) in Canada, responsible for assuring drug prices are not excessive, announced sweeping regulatory changes a few years ago including legally binding maximum drug prices, which has no precedence or equivalence in any other developed country. The proposed change was arbitrary and not based on scientific evidence. The changes to the PMPRB will deter many pharmaceutical companies from bringing innovative medicines to Canada because it would not be affordable for them.
On March 10, 2021, PDSA alongside CORD and several other patient organizations and those affected by a rare disease, participated in a rally to protest the proposed changes to the PMPRB. While some progress has been made since then, there are still issues that need to be resolved.
Protesting the PMPRB’s plans – March 2021
NRBDO is a coalition of Canadian patient groups, formed to share the best practices in health care delivery for people with rare blood disorders. NRBDO’s mandate includes improving the delivery of healthcare to people affected by rare blood disorders by working together to ensure the best comprehensive care, ensuring a safe and secure blood system, supporting the members by sharing best practices in governance, developing skills in health care advocacy, and avoiding overlap and inefficiencies. PDSA Research Program Manager Jennifer DiRaimo is an NRBDO board member representing PDSA in Canada.
PDSA Canada participates regularly in NRBDO forums to network and learn from other patient organizations supporting individuals with blood disorders, many of whom face similar issues with treatment access and awareness.
CBS connects blood and plasma donors to patients in need, in addition to connecting healthcare professionals and medical researchers. CBS is nationally responsible for a secure ‘system of life essentials’ for transfusion and transplantation that’s reliable, accessible, and sustainable. Every day they work diligently to help save lives, restore health, and earn the nation’s trust.
ITP patients rely on therapies derived from blood and plasma donations such as platelet transfusions (in emergency situations), and IVIG (a common first-line therapy). Both blood products and plasma are in short supply.
Advocating to secure our plasma supply in Canada
PDSA’s Research Program Manager, Jennifer DiRaimo, is an active patient representative on CBS’s Patient Engagement Forum. The Patient Engagement Forum meets twice a year and is comprised of a panel of representatives brought together from different patient organizations to better provide CBS with perspectives and first-hand insights into the importance of products (such as blood and plasma) to patients. Through this forum, the patient perspective can be shared first-hand.
ITP Research in Canada
Canadian studies funded by PDSA
Development of New Diagnostic Tests to Categorize Different Subtypes of Immune Thrombocytopenia (ITP)
Investigator: Ishac Nazy, PhD
Institution: McMaster University
Emergency Management of Severe Thrombocytopenia and Bleeding in Patients with ITP
Investigators: Siraj Mithoowani, MD, FRCP(C) and Donald Arnold, MD, MSc, FRCP(C)
Institution: McMaster University
Immature Platelet Fraction and Treatment Response in ITP
Investigator: Emily Harris, MD, and Rachel Grace, MD
Institution: Boston Children’s Hospital
Identifying Risk Factors for Critical Bleeding in Patients with Immune Thrombocytopenia
Investigator: Emily Sirotich, PhD
Institution: McMaster University
Canadian Clinical Trials
An updated list of clinical trials actively recruiting in Canada.
PDSA’s ITP Natural History Study Registry
The ITP Natural History Study Registry is an international patient-consented registry of individuals with ITP. The registry aims to collect data on the natural progression of ITP, enabling PDSA to gather data on diagnosis and treatment, management of care, quality of life, and clinician reporting. The registry is administered by PDSA and overseen by NORD and a committee of leading hematologists, ITP patients, and caregivers.
When you register with PDSA’s global ITP Natural History Study Registry, you join the thousands of patients living with ITP from around the world to advance research and improve the quality of life for others with platelet disorders. At PDSA, we know you are the key to unlocking a positive future for those with ITP.
If you have any questions or concerns about participating, you can reach out to PDSA’s Research Program Manager, Jennifer DiRaimo, at firstname.lastname@example.org or call the PDSA office at 1-87-PLATELET.
Supporting PDSA From Canada
The Canadian income tax act defines nonprofits and charities differently, and the classification impacts your gift for tax purposes. PDSA is a registered Canadian nonprofit, which means we are unable to issue donation receipts to Canadian donors for income tax purposes. Only registered charities in Canada can issue such receipts.
A gift to PDSA is a gift of impact. Though gifts generously made to PDSA by Canadian residents do not qualify for any tax credits, we want you to know that your donations do support our work in Canada, helping to underwrite important Canadian studies on ITP (including the groundbreaking research being conducted at McMaster University) and advancing our advocacy work on behalf of the Canadian ITP patient population.
We welcome your involvement and meaningful support!
PDSA Members help drive our mission and sustain the life-altering resources we offer to patients and caregivers as they navigate the ITP journey.
Exclusive Benefits of Membership:
- The Platelet News, our quarterly publication dedicated to keeping the ITP community informed
- Access to the annual ITP Conference, the premier patient event, at a reduced membership rate
- Access to select recorded content from ITP Conference, made available to members in September for ITP Awareness Month
- 10% discount on The Platelet Store items, when purchased by check
- Free membership in the ITP Poke-R Club, a one-of-a-kind clinical support program just for kids, and associated benefits
- Living with ITP: Patients Share Their Stories – a collection of ITP patient stories provided on a USB to new members
20/20 ITP Research Program
PDSA plays an essential role in unifying the global ITP community with two steadfast goals:
- improving patient quality of life, and
- finding better treatments and a cure for this rare bleeding disorder.
Research influences health care today by offering invaluable insight and data that informs current understanding and practices surrounding ITP. Research also promises hope and improved patient outcomes as we look to the future. With the power to unlock a brighter tomorrow for ITP patients, research remains a primary focus of our attention and resources.
We invite you to partner with us to strengthen and further the impact of our global research efforts. Investing in PDSA’s global ITP Research Program is an investment in the future of all ITP patients, including Canadians.
Beyond membership, you can strengthen PDSA’s ongoing efforts to support and serve the ITP patient community with a general donation. Your gift, of any amount, will go to work immediately to help improve outcomes for ITP patients around the world.
Meet Jennifer DiRaimo, Our Canadian PDSA Representative
Jennifer DiRaimo is PDSA’s Research Program Manager. She began working with PDSA in the fall of 2019 and holds a Master’s in Genetic Counseling from Brandeis University. Jennifer has worked as a Canadian Certified Genetic Counselor within a Canadian hospital setting for 14 years. She has experience working collaboratively with health care providers and loves teaching and research. After her ten-year-old son passed away unexpectedly from immune thrombocytopenia (ITP), Jennifer chose to redirect her skills to help patients and their families with platelet disorders. Since working at PDSA, Jennifer has managed our research program and engages in advocacy work to help improve the lives of those living with ITP in Canada, and their families.
You may contact Jennifer at email@example.com if you have any questions, concerns, or ideas about advocacy or research in Canada!
The PDSA Canada page is sponsored by Sobi Canada