Why AML Awareness Matters for RUNX1-FPD Families
This year’s AML World Awareness Day may have passed, but its message this year highlighting the need for greater education and support around the long-term physical and psychological effects of treatment for acute myeloid leukemia (AML) still matters. Especially for individuals and families living with RUNX1-FPD.
RUNX1-FPD is a rare inherited condition that increases the risk of developing blood cancers like AML, although not everyone with RUNX1-FPD will go on to develop leukemia. Still, the impact can be significant for those who do, and it does not end when treatment ends.
Many patients face long-term challenges, from fatigue and fertility issues to emotional health struggles and secondary conditions that can develop years after remission.
That is why RRP is focused on supporting research aimed at preventing leukemia before it starts and on sharing resources to help families manage the physical and emotional effects of AML, whether they are navigating diagnosis, treatment, or life after treatment.
Signs and Symptoms of AML
One of the most common questions we hear from those in our patient community who do not have an AML diagnosis is: What should I watch for? Common symptoms can include:
Fatigue
Frequent infections
Easy bruising or bleeding
Shortness of breath
Pale complexion
Unexplained weight loss
However, symptoms can vary widely, and many of these signs overlap with other conditions, including symptoms already experienced by individuals with RUNX1-FPD. That is why staying in close contact with your care team and monitoring any changes over time is so important.
If you'd like to learn more about AML diagnosis, we recommend checking out these trusted resources:
KnowAML: Causes & Symptoms video
Leukemia & Lymphoma Society: Acute Myeloid Leukemia in Adults guidebook
What AML Means for Families with RUNX1-FPD
For those who do receive an AML diagnosis, the experience can be intense and disruptive, often involving hospital stays, complex treatments, and major life adjustments. On top of the medical side, families may also face missed work, travel challenges, insurance issues, and emotional stress.
It’s a lot to navigate, and no one should have to do it alone. That’s why, in addition to investing in prevention-focused research, we want to ensure families have access to the practical resources that can help if AML becomes part of their story, especially when it comes to managing the long-term effects of treatment.
Navigating Life After Treatment: Where Families Can Find Support
AML treatment can be physically and emotionally exhausting, and for many patients, the effects don’t stop when treatment ends. Long-term issues like fatigue, fertility changes, heart or lung complications, and even cognitive symptoms like “chemo brain” are common. Emotional effects, including anxiety, depression, and post-traumatic stress, can also linger.
Fortunately, there are organizations around the world offering real, actionable help. Below, you’ll find AML support resources organized by region, along with some of the services they provide, to help you connect with the organization(s) closest to you.
Resources
-
Information Resources: Detailed information on AML, including treatment options and supportive care.
Support Programs: Transportation, accommodation assistance, and more for patients in treatment.
Leukemia & Lymphoma Society of Canada (LLSC)
Educational Materials: Comprehensive guides and fact sheets about AML.
Support Services: Peer support programs, information specialists, and survivorship help.
-
Practical Support: Guidance on managing daily life with AML (work, finances, childcare).
Emotional Support: Resources for coping with the emotional impact of AML.
Information Resources: Detailed AML info, including treatment options and coping strategies.
Support Services: Nurse helpline and online community.
Support Services: Helpline, nurse-led support, and buddy schemes.
Information Resources: Booklets and online education for AML patients and families.
Support Line: Confidential cancer support line.
Online Community: Peer support forum for AML and blood cancer patients.
-
Survivorship Resources: Provides information on life after AML treatment, including follow-up care and emotional support.
Counseling Services
Live Support Group: Free live chat counseling by oncology social workers (for New York and New Jersey residents).
Online Support Group: Ongoing message board platform support.
Resource Navigation: Free telephone resource navigation for cancer patients and caregivers, helping connect to treatment information and community resources.
Financial Assistance: Limited financial help for treatment-related costs, plus help finding additional resources.
Educational Materials: Information on AML risk factors, symptoms, and treatment options.
MyLifeLine Support Services: Online community for patients, survivors, caregivers, and loved ones impacted by cancer.
One-on-One Support: Matches AML patients with survivors for personalized support.
Caregiver Support: Provides mentors for caregivers of cancer patients.
Leukemia & Lymphoma Society (LLS)
Clinical Trial Support Center (CTSC): Connects patients with nurse navigators to explore trial options.
Financial Assistance Programs: Includes co-pay assistance, travel grants, and urgent need programs.
Support Groups: Offers both in-person and virtual groups.
Information Specialists: Personalized disease and treatment guidance.
LLS Community: Online platform for patients and caregivers.
Online Support Community: Connects patients, survivors, and caregivers through discussion threads.
Educational Programs: Offers webinars and Q&A sessions on leukemia topics.
National Coalition for Cancer Survivorship (NCCS)
Cancer Survival Toolbox: Free audio program to help develop skills for managing cancer challenges.
Advocacy Efforts: Policy work focused on improving survivorship care.
-
Interactive Guides: Downloadable guides on managing the long-term effects of AML.
Support Group Directory: Global listing of AML-specific patient and caregiver support groups.
Resources current as of April 2025. We will continue updating this list as new support programs become available.
Whether you are living with RUNX1-FPD, currently have an AML diagnosis, are supporting a loved one who does, or are navigating life after treatment, we want you to know you are not alone.
While we continue pushing for research that can lead to earlier interventions and better outcomes, we are just as committed to helping families find the support they need right now. Please share these resources with others who may need them, and do not hesitate to contact us if we can help you navigate what is next in your health journey.
If you know of additional resources you’ve found helpful that aren’t listed here, we would love to hear from you and add them to this growing list.