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Resources

Information you can actually use.

Guides, papers, and tools for the BHASnet community. Open to everyone!

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What's Here

Information you can actually use.

Guides, research papers, and links our community has found genuinely useful — everything from plain-language explainers for someone newly diagnosed to more clinical resources for healthcare providers. Organized into folders so you're browsing a library, not scrolling an undifferentiated list.

Guides & Explainers

Plain-language material on living with, or caring for someone with, a blood health disorder.

Research & Data

More clinical material, useful for healthcare providers and anyone who wants the deeper detail.

External Links

Trusted resources from partner organizations and government health bodies.

Start Here

Newly diagnosed or new to BHASnet?

Whether you're newly diagnosed, years into this, or showing up for someone you love, we've curated the resources to help.

Looking for someone to talk to?

A new diagnosis brings a lot of questions that don't need a hospital visit — just someone who gets it. That's what we're here for.

If this is a medical emergency, call 911 or go to your nearest emergency room.

Your First Steps Guide

A plain-language introduction to sickle cell disease and what to expect.

Download PDF

Questions to Ask Your Doctor

A checklist of things to discuss at your first hematology appointment.

Download Checklist

Find Your Community

Connect with a peer supporter who has been through it.

Join the Conversation
Living Well

Practical information for everyday life.

Managing a blood disorder isn't just about doctor's appointments. Here's what daily life can look like, and how to make it work.

Pain & Fatigue Management

  • Non-medication pain relief techniques (heat, relaxation, distraction)
  • Understanding & tracking your pain triggers (journal template)
  • Energy conservation: How to pace yourself
  • Mental health resources for chronic pain

Navigating the System

  • How to apply for disability benefits in Canada
  • A guide to your rights in the emergency room
  • Tips for medication coverage & the pharmacare system
  • Advocating for yourself at school or work

Emotional & Social Support

  • Talking to friends & family about your condition
  • How to find a therapist who understands chronic illness
  • Managing the guilt of asking for help
  • Support groups (virtual & in-person)

Nutrition & Lifestyle

  • Nutrition basics: What to eat (and what to avoid)
  • Gentle exercise routines for low-energy days
  • Hydration strategies to prevent crises
  • Travel tips for people with chronic conditions
Living Well Journal

Practical articles for everyday life.

From pain management to navigating the system, we're building a library of content to support your daily life.

Advocacy

Your voice has power. Use it.

Change doesn't happen by accident. Here's how you can help build a better system for everyone affected by blood disorders.

Blood Cancers

Leukemia, lymphoma, myeloma, and other blood cancers.

Showing 25 of 106 resources
File Category
PDF Tags: Multiple myeloma Source: Myeloma Canada · Submitted by BHASNet
Blood Cancers
LINK U.S. federal patient-education overview including 2023 gene-therapy approvals. Non-Canadian source. (International resource, included as a high-quality supplement — see BHASNet’s Canadian-first sourcing note.)
Tags: Sickle cell disease
Source: National Heart, Lung, and Blood Institute (NHLBI/NIH), USA · Submitted by BHASNet
Blood Cancers
LINK Clinical guideline summaries, stroke-prevention evidence and structural-racism guidance. Non-Canadian source. (International resource, included as a high-quality supplement — see BHASNet’s Canadian-first sourcing note.)
Tags: Sickle cell disease
Source: U.S. CDC · Submitted by BHASNet
Blood Cancers
LINK Evidence-based guidelines, pocket guides and shared decision-making tools for SCD care. Non-Canadian source. (International resource, included as a high-quality supplement — see BHASNet’s Canadian-first sourcing note.)
Tags: Sickle cell disease
Source: American Society of Hematology (ASH) · Submitted by BHASNet
Blood Cancers
LINK Widely used consumer-health reference on SCD symptoms, causes and complications. Non-Canadian source. (International resource, included as a high-quality supplement — see BHASNet’s Canadian-first sourcing note.)
Tags: Sickle cell disease
Source: Mayo Clinic, USA · Submitted by BHASNet
Blood Cancers
LINK North America’s largest adult SCD/thalassemia clinic; includes transition video and clinic information.
Tags: Sickle cell disease, thalassemia
Source: University Health Network (Princess Margaret Cancer Centre) · Submitted by BHASNet
Blood Cancers
LINK Peer-reviewed epidemiological study of SCD prevalence and outcomes in Ontario.
Tags: Sickle cell disease
Source: PMC / Canadian research (peer-reviewed) · Submitted by BHASNet
Blood Cancers
VIDEO News segment on a Black History Month blood-donation and SCD awareness event in Toronto.
Tags: blood donation, health equity, Sickle cell disease
Source: CP24 / CTV News · Submitted by BHASNet
Blood Cancers
LINK Investigative report on racial bias in ER pain treatment for Canadians living with SCD.
Tags: health equity, Sickle cell disease
Source: CTV News · Submitted by BHASNet
Blood Cancers
LINK Global fact sheet on SCD causes, symptoms, treatment and WHO’s public health response. Non-Canadian source. (International resource, included as a high-quality supplement — see BHASNet’s Canadian-first sourcing note.)
Tags: Sickle cell disease
Source: World Health Organization (WHO) · Submitted by BHASNet
Blood Cancers
LINK Explains what a screen-positive newborn result for SCD means and next steps for families.
Tags: Sickle cell disease
Source: Newborn Screening Ontario · Submitted by BHASNet
Blood Cancers
LINK Plain-language explainer of hemoglobin SS, SC and sickle beta-thalassemia types for families.
Tags: Sickle cell disease
Source: AboutKidsHealth (SickKids) · Submitted by BHASNet
Blood Cancers
LINK Overview of Canada’s largest pediatric hematology/oncology program (SCD, thalassemia, leukemia, BMT).
Tags: blood cancers, Sickle cell disease, thalassemia
Source: The Hospital for Sick Children (SickKids) · Submitted by BHASNet
Blood Cancers
LINK Links Ontario Health’s Quality Standard with PCMCH’s Clinical Handbook for Sickle Cell Vaso-occlusive Crisis.
Tags: Sickle cell disease
Source: Provincial Council for Maternal and Child Health (PCMCH) · Submitted by BHASNet
Blood Cancers
LINK Plain-language summary of Ontario’s 2023 SCD Quality Standard and its anti-Black-racism quality statement.
Tags: health equity, Sickle cell disease
Source: The Red Blood Cell Disorders Hub (UHN) · Submitted by BHASNet
Blood Cancers
LINK Patient story (Andy) illustrating lifelong reliance on matched blood transfusions/exchanges.
Tags: blood donation, Sickle cell disease
Source: Canadian Blood Services · Submitted by BHASNet
Blood Cancers
LINK Profiles of five Canadians with SCD and their reliance on donated blood/red cell exchange.
Tags: blood donation, Sickle cell disease
Source: Canadian Blood Services · Submitted by BHASNet
Blood Cancers
LINK CBS profile of SCDAC’s national advocacy role and collaboration on donor recruitment.
Tags: Sickle cell disease
Source: Canadian Blood Services · Submitted by BHASNet
Blood Cancers
LINK Canadian research summary on red cell antigen genotyping to reduce alloimmunization in SCD transfusion.
Tags: Sickle cell disease
Source: Canadian Blood Services (research unit) · Submitted by BHASNet
Blood Cancers
LINK Discusses community-based research on barriers to blood donation among African, Caribbean and Black Canadians.
Tags: health equity, Sickle cell disease
Source: Canadian Blood Services · Submitted by BHASNet
Blood Cancers
LINK Ontario’s leading SCD patient charity; support, education, advocacy and grant programs.
Tags: Sickle cell disease
Source: Sickle Cell Awareness Group of Ontario (SCAGO) · Submitted by BHASNet
Blood Cancers
LINK Discusses systemic racism in Canadian hospital care for Black SCD patients presenting with pain crises.
Tags: Sickle cell disease
Source: Sickle Cell Awareness Group of Ontario (SCAGO) · Submitted by BHASNet
Blood Cancers
LINK Program encouraging blood/stem cell donation from Black and African-Canadian communities in partnership with CBS.
Tags: blood donation, Sickle cell disease
Source: Sickle Cell Awareness Group of Ontario (SCAGO) · Submitted by BHASNet
Blood Cancers
VIDEO Collection of recorded webinars: transitioning care, stroke complications, fertility, outreach strategies.
Tags: Sickle cell disease
Source: Sickle Cell Awareness Group of Ontario (SCAGO) / YouTube · Submitted by BHASNet
Blood Cancers
LINK Alberta-based charity providing awareness, coping skills education, and support for SCD patients/families.
Tags: Sickle cell disease
Source: Sickle Cell Foundation of Alberta · Submitted by BHASNet
Blood Cancers
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