Resources
A diagnosis of replication repair deficiency or CMMRD can be a daunting experience for patients and families. It can be challenging to come to terms with the diagnosis and the impact it may have on your life. However, it’s important to realize that you are not alone in this journey. There are many resources available to help you cope and manage the condition.
First and foremost, it’s crucial to seek support from your medical professionals. These experts can provide you with valuable information on RRD, its symptoms, and the recommended surveillance protocols. They can also offer emotional support and connect you with other patients who may be going through a similar experience.
However, in addition to your trusted medical professionals, we have compiled some additional resources below.
Receiving an RRD or CMMRD diagnosis can be an overwhelming experience for both patients and their families. To provide support and guidance during this difficult time, we have curated a list of resources and articles specifically designed to help individuals navigate a new diagnosis. From practical tips and advice to emotional support and encouragement, these resources are tailored to the unique needs and challenges faced by RRD families as you navigate this challenging journey.
- 6 Tips for Facing Your Child’s Rare Disease Diagnosis
A collaborative article written by patient advocate Parvathy Raman Krishnan, Dr. Cynthia Powell and UNC in honor of Rare Disease Day 2023. Provides valuable information and advice for parents navigating a new rare disease diagnosis. - Cancer Care Ontario
Cancer Care Ontario offers patients essential information on cancer treatments, drug information, and symptom management. They also provide free professional support, such as resource navigation, counseling, and support groups, to patients in Ontario and Canada.
We understand how important it can be to connect to other patients and families going through the same journey. Below, we have curated a comprehensive list of community resources and social media platforms specifically tailored for those dealing with an RRD or CMMRD diagnosis.
- CMMRD/BMMRD AWARENESS: Constitutional Mismatch Repair Deficiency Facebook Group
If you are looking for a supportive community to connect with and gain valuable insights and advice, please visit this family-run Facebook group. This group is specifically designed to serve as a valuable resource for patients and their families, and is carefully moderated and led by patient advocates who are dedicated to providing support and guidance. Offering emotional support and practical advice, this group a safe space open to anyone dealing with a CMMRD diagnosis, whether newly diagnosed, currently undergoing treatment or grieving the loss of an affected loved one.
The websites and apps listed below contain valuable resources for families and individuals seeking guidance on mental health and wellness. These websites provide not only useful information, but also interactive activities such as breathing exercises and coping strategies that can be easily accessed and incorporated into daily life. Recommended by Angela Yohan (the social worker for the IRRDC), these websites are an excellent starting point for patients looking to manage their mental well-being.
Websites
- MindYourMind
MindYourMind offers a range of helpful resources, including informative articles and interactive activities that can help you better understand and manage your mental health. These include coping strategies, information on different mental health conditions, or tools to support your overall well-being. - AnxietyCanada
Access valuable information on various types of anxiety, including audio-guided breathing exercises and effective coping strategies to help manage symptoms. - Positive Psychology
Positive Psychology offers free tools and resources designed to help individuals cope with anxiety and stress. With 30 different meditation exercises and activities, this site provides a diverse range of options to help you learn to manage your anxiety and stress levels. - Very Well Mind
This site provides a comprehensive overview of the top meditation resources of 2023. With detailed reviews and insights on each resource, you can decide which one is best suited to your needs and preferences. - Red Cross Canada
Offers a comprehensive training program designed to teach you the fundamentals of psychological first aid for $20. This includes strategies for managing stress, promoting resilience, and facilitating recovery for yourself and others
Apps
- MindShift (by AnxietyCanada)
The MindShift app, developed by Anxiety Canada for both IOS and Android, is a powerful tool designed to help individuals manage anxiety and stress. This app provides a range of practical strategies and exercises to help users shift deal with everyday anxiety. - Breath2Relax
This IOS app is a portable stress management tool which provides detailed information on the effects of stress on the body and breathing exercises. This app is also available on android.
The links and phone numbers below provide access to a wealth of crisis and counselling resources for patients in Ontario, including hotlines, online chat services, and support groups. These resources, recommended by Angela Yohan (the social worker for the IRRDC), are designed to provide immediate support and guidance for individuals experiencing a crisis or struggling with their mental health. By accessing these resources, users can easily connect with a range of reputable organizations and services that offer support and assistance 24/7. Whether you are dealing with a mental health emergency or simply need someone to talk to, these resources can help you find the help you need.
Free/Subsidized Counselling Programs
- Children’s Mental Health Ontario
Has mental services for children 0-18, with locations all over Ontario, including same- day/walk-in counselling. - Canadian Association of Mental Health (CAMH)
Referral-based programs in Ontario for ages 15+. - Bounce Back
Guided self-help program in Canada for ages 15+, offered through Canadian Mental Health Association. - Canadian Mental Health Association (CMHA)
Referral-based programs in Canada for ages 12+. - Employment Assistance Program (EAP)
For employees and immediate family members, accessed through eligible workplaces in Canada.
Distress Lines (Greater Toronto Area)
- Toronto Distress Centres:
416 408-4357 or 408-HELP - Gerstein Centre:
416 929-5200 - Community Crisis Line Scarborough and Rouge Hospital:
416 495-2891
24/7 telephone crisis support. Service borders: South to the Lake, North to Steeles Avenue, east to Port Union Road, and west to Victoria Park - Durham Crisis and Mental Health Line:
905 666-0483 - Spectra Helpline:
Brampton and Mississauga Residents: 416 920-0497 or 905 459-7777
Teletypewriter: 905 278-4890; Languages: English, Punjabi, Hindi, Urdu, Spanish, Portuguese - Distress Centre Halton:
For Residents of the Halton Region (Burlington, Halton Hills, Milton, and Oakville).
Oakville: 905-849-4541
Burlington: 905-681-1488
Milton/Halton Hills: 905-877-1211