Together We Thrive

The Mighty is an online community where young patients can share their experiences, find support, and connect with others who truly get it. Whether you prefer reading stories, listening to podcasts, or joining discussions, there’s a space for you here!

You can explore The Mighty through their website, app, or YouTube channel, and they have 700+ health communities covering everything from rare disorders to ADHD, mental health, and more. Check out their “Teens & Young Adults” section to find support from people your age!

Content Warning: This resource discusses topics like mental illness, eating disorders, self-harm, and suicide.

KidsHealth is a great resource for teens looking for reliable info on health, wellness, and emotions. Whether you have questions about your body, mental health, or medical conditions, this site has easy-to-understand articles, videos, and blogs to help you out.

Featured topics include:

• Sexual Health: Learn the facts about your body, relationships, and staying safe.

• Mental & Emotional Wellness: Get tips on managing stress, anxiety, and self-care.

• Drugs & Alcohol: Understand the risks and how to make informed choices.

• Medical Conditions: Find clear explanations on conditions like cancer, sickle cell anemia, epilepsy, migraines, asthma, and more.

• Q&A Section: Check out their Q&A section for answers to things like “What does it mean to be a carrier for a genetic condition?” and “What’s the difference between a treatment and a cure?”.

No matter what you’re going through, KidsHealth gives you the info you need to take care of yourself!

Health Talk is a website that offers patient support for 50+ medical conditions including epilepsy, chronic pain, long-term health conditions, and many more. You can search for your condition, learn coping mechanisms from other patients and healthcare professionals, listen to personal stories, and connect on community forums.

This website is perfect for learning about your medical condition and how to tackle it!

NORD is a great place to learn more about rare diseases and find support. Their huge database has information on 1,300+ rare conditions, including symptoms, causes, treatments, clinical trials, and organizations that can help. If you have a rare disease, you can search their website to find info and support just for you!

Need extra help?

Check out their RareCare Patient Assistance Programs to get support with learning about your condition, medical tests, caregiver aid, and even financial help (available in the USA).

Want to learn more?

Take free, self-paced online courses on the Rare EDU Learning Platform. Learn about rare diseases, patient advocacy, and how new medicines are developed!

Courses include:

• An Introduction to Rare Diseases: Learn the basics of rare diseases, real-world stories, and how people with rare conditions can make a difference.

Rare Disease Drug Development: Discover how scientists create new treatments, what clinical trials are, and how medicines get approved. (Also available in Spanish!)

CORD is a Canadian organization that advocates for better health policies to support patients with rare disorders. They host in-person events like Rare Disease Day, where they raise awareness and educate the public and decision-makers on how rare conditions affect patients’ lives.
Want to make your voice heard on how the government can better support those with rare disorders? You can take action by filling out a quick form to send a message to your MP and provincial representative. It’s your chance to help shape the change you want to see!

RQMO is a Quebec-based organization that provides valuable information and support for people living with rare diseases.

• Visit the iRARE RQMO Centre to learn about your rare disease, practice guides for medical monitoring, patient associations, disease experts, clinical trials, and drugs that are currently on the market. 

Don’t have a diagnosis? The iRARE Centre will provide you with support to help you find one!

• They also offer a matchmaking service to connect you with someone who has the same rare disease, so you can share experiences and support each other.

• Learn about available and in-progress treatments for your rare disease!

Do you have Ehlers-Danlos syndrome? RQMO has a high-quality info page to help you out!

Chronic Conundrums is a podcast channel that shares the voices of young people with health conditions. With a total of 8 episodes, they discuss the unique experience of being a kid or teen with chronic health conditions. Topics include hospital admissions, treatment, tackling adulthood, and more!

Ever wondered about how your life would change if you took a drug that could change the course of your illness? In this hour and a half episode, a young woman with Cystic Fibrosis discusses her experience taking Trikafta, a life-altering drug. She delves into the challenges of adjusting to a new chapter in life, the effects of the drug on her mind, body, and future, and the unexpected burdens that come with taking the drug. If you are curious about the pros and cons of taking an illness-altering drug, this episode is for you!