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.

Rare Youth Revolution is an online magazine for kids and teens living with rare medical conditions. This magazine helps empower youth and their families by sharing real stories and advice straight from other young people who understand what it’s like. 

Check out their wide range of topics:

• Women in RARE: Hear about the unique challenges and triumphs that girls and women face while living with rare conditions.

• Advocacy Corner: Learn how to speak up for yourself and get the care you deserve.

• Letters to My Younger Self: Young adults share what they wish they had known when they were younger and living with a rare disease.

• The World of Work: Get tips on how to transition into adulthood and start your career, even while managing a rare condition.

• Our Voices & Our Voices Kids: Read stories from other youth sharing their personal journeys, struggles, and successes.

• And many more!

Want to share your own story? You can submit your voice to be featured on their blog!

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!

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!)

Stupid Cancer is all about bringing together adolescents and young adults affected by cancer. They offer five online and in-person programs to help you connect, learn, and share your story.

Here’s what they offer:

• Stupid Cancer Stories: Read real stories from young cancer patients about their journeys, challenges, and victories.

• Discussion Series: Join 90-minute online workshops that do a deep-dive into a chosen topic of the month. The first section is a recorded presentation, followed by a discussion in small groups. Check out their Video Vault for past Discussion Series on cancer & intimacy, mental health & wellbeing, and more!

• CancerCon: An in-person conference in Washington, DC where young cancer patients gather to learn from experts, share personal stories, and build community.

• Meetups: Want to connect with other young cancer patients who get it? Stupid Cancer offers meetups throughout the year. In-person meetings take place all over the USA. Can’t make it in-person? Join their online sessions! Check-out their calendar for the full updated meetup schedule.

And more!

Are you looking for a creative way to express your emotions? In this 10-minute YouTube video, the creator Art By Stella Chang guides viewers in reflecting on their personal experiences while making art. She draws on her own experiences with lupus to paint a self-portrait featuring her growth, with the message that your illness does not define you. Follow along with the video to create your very own healing art piece!

In this 7-minute TEDxYouth talk, Emily Bonia empowers young chronic illness patients to pave their own path to a successful life. She discusses how her Crohn’s Disease diagnosis impacted her dream career, and the steps she took to find a job that simultaneously accommodated to her medical needs and provided her a sense of fulfillment and joy.

In this 13-minute TEDxNTU talk, Tammie Ong shares the lessons she has learned since developing a chronic progressive illness at the age of 17. She reflects on the support of her family and friends, the large impact small acts of kindness have, and living life to the fullest despite health challenges.

Coach Art is an amazing program that connects kids and teens (ages 5-18) with chronic illnesses—and their healthy siblings—to weekly online art and sports sessions all across America! Whether you’re into drawing, painting, or trying out a new sport, Coach Art has something for everyone.

When you join, you’ll be paired with a super talented volunteer coach who will guide you through one-on-one sessions every week for 4 weeks. By the end of the month, you’ll get a chance to show off everything you’ve learned!

It’s a fun way to learn new skills, make awesome creations, and connect with others who get what you’re going through!

If you’re looking for music that speaks to your journey, check out the 250+ song playlist created by Spotify user kellehlog. Each track is packed with meaningful lyrics that really resonate with the experience of living with chronic illness and pain.

You can stream it on Spotify’s free version (with ads) or upgrade to Spotify Premium for an ad-free experience! Whether you’re in need of some comfort or just want to vibe to relatable tunes, this playlist has got you covered.

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 Canadian 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!

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!

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!

The Our Power Is Within Podcast shares real stories from people who have found ways to heal their bodies and minds from chronic pain, illness, and disease. Hosted by Chazmith Newton, this podcast brings in experts to talk about cool, up-and-coming healing methods like brain retraining, journaling, exposure therapy, and more.

Tune in and explore new ways to help yourself heal—who knows, you might find a method that works perfectly for you! It’s all about discovering new possibilities on your journey to feeling better.

Are you wondering how chronic illness may impact your future dating life? In this blog post, a rheumatoid arthritis patient speaks on her experience navigating online and in-person dating while being chronically ill in her 20s. While dating with a chronic illness can be daunting, she emphasizes that you can find meaningful connections through open-communication, prioritizing self-care, and being selective with who you choose to be vulnerable with.

Many chronic illness patients feel like they are a burden to their loved ones– an especially difficult and complex feeling when entering a new relationship. This blog post offers practical advice for empowering yourself while taking on the dating scene: loving all parts of yourself, reflecting on who deserves to get to know the real you, and being open and vulnerable. Under the Disclosure section, they walk you through telling your romantic partner about your illness, helping make the experience less daunting.

In this 75-minute webinar, Kira Lynne, a clinical counsellor, takes a deep dive on what it means to be dating while living with chronic illness. She discusses themes of socio-cultural influences on caretaking, exercises for increasing your acceptance of your own illness and the consequences it comes with, exercises for understanding and validating your partner through periods of difficulty due to illness, and advice on continually strengthening your bond with your partner.

If you are entering your mid-to-late teens, you may have questions about how your chronic illness will affect your intimate relations with romantic partners. In this blog post, youth psychosexologist Moira Tzitzika discusses the vulnerable topics of body image, self esteem issues, deciding if/when to tell your partner about your illness, and possible effects chronic illness can have on sexuality.

Have you ever wanted to have a friend who understands everything about your medical journey?  If you live in the USA, you can request a free “Medical Mini” stuffy that has the same condition as you. Bring your medical mini with you to support you wherever you go!

Fun Fact: Medical Minis was created by a young child with a medical illness, just like you!

Do you have cancer and want to talk to your friends about it? Telling your friends about your cancer can be tough. You might be wondering “Where do I begin?”,  “How will my friends respond?”, or “How do I stay connected with my friends during treatment?”. If you want answers to these questions, this blog post is for you!

Want to tell your friends about your illness, but don’t know where to begin? This blog post walks you through a short script to start the conversation. They also provide a script guiding your teacher in telling your classmates, if you’d like them to.

Telling people about your chronic illness can be scary and intimidating, but it doesn’t have to be. In this 18-minute youtube video, a chronic illness advocate shares her advice on how to tell your family, work, school, friends, and romantic partners that you have a chronic illness. If you are wondering who to tell, when to tell them, and how to do it, this video is for you!

In this 12-minute video, professional tennis star Venus Williams talks about her journey with Autoimmune Disease. She discusses how to get diagnosed, how to improve symptoms, how illness affects her life, and general advice for anyone dealing with a long-term illness. 

Her story is a reminder that your illness doesn’t define you. You can achieve your dreams if you believe in yourself!

The YouTube channel You Look Okay To Me is run by a young woman living with chronic illness. She makes 5-20 minute video essays discussing a variety of topics, including “The chronic illness guide to working from home”, “Why is it so hard to describe my pain”, and “Things not to say to someone with a chronic illness”. 

She also discusses intersections between being chronically ill and being a person of colour (POC), offering a perspective that is crucial in understanding the experiences of marginalized groups. 
Check out her instagram @youlookokaytome for reels and posts you can relate to!

In this 50 minute podcast episode, the hosts of the Sickboy Podcast interview KYRIANNA. She is a watercolour artist who uses her art to spread awareness on the struggles of chronic pain. Listen to KYRIANNA’s experiences living with a health condition since she was 12. She discusses the dismissal and gaslighting that comes with having an ‘invisible illness’. She shares how art is her mode of emotional expression, sharing her difficult health experiences with the world.

Pamela Rae Schuller, a New-York comedian with Tourettes and OCD, shares the good and the bad of living with her health conditions. On this hour-long podcast episode, she shares her experiences of dating with a disability and a mental health condition. She takes a witty and light-hearted approach to her stories, making sure you’ll leave the podcast enlightened!

Want to learn strategies for controlling your chronic pain that are backed by scientific evidence? This 40-minute podcast episode is just for you! Dr. Afton L. Hassett, the Director of Pain and Opioid Research at the University of Michigan, speaks on practical insights from her area of expertise: pain management. You will learn how sleep, exercise, and mood play a crucial role in pain perception, and what you can do to improve your pain.

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!

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!

Feeling confident in your body can be hard. It can be even harder when you have a health condition. In this 6-minute video, a girl with Ehlers-Danlos syndrome talks about how health conditions affect your body image. She reminds you that illness-related scars and body changes are a reminder of how strong you are! She also discusses how puberty changes your body and your feelings.

Do you wish your teacher understood your illness better? Do you want school to be easier and more fair for you and other kids like you? These letters were written by a mom whose kids have chronic illnesses. They help teachers learn how to support kids with health problems—both in class and outside of it.

Do you want to educate a friend, classmate, family member or teacher about the challenges of dealing with chronic illness in school? This 9 minute video sheds light on the experiences of school-aged children (ages 8-17) with health conditions. They discuss how illness affects multiple aspects of their lives, including mental health, school and grades, extracurriculars, and more.

This 7-minute video is a chronic illness campaign that sheds light on navigating high school with a new diagnosis. Watch this on your own to relate to the experience, or share this with your friends to start the conversation on what it means to be a young person with a health condition.

Disclaimer: We do not endorse the product that the company is selling at the end of the video.

This quick three and a half minute video provides advice on how to find a balance to support both your health and academic goals. Tips include open communication to school staff, flexible scheduling, and finding alternative options such as online classes.

Are you in highschool and thinking about college or university? Are you worried about how your chronic illness may impact your higher education? In this 15 minute video, a university student with chronic illness discusses 5 reasonable adjustments that are available to you at university. 

Disclaimer: This video discusses adjustments available in UK post-secondary schools specifically. Worldwide, universities offer similar adjustments, but it may differ from school-to-school. Make sure to check out the guidelines of your prospective school to get the most relevant information on accommodations for your chronic illness.

In this 40 minute video, Ella Rabin, a Juvenile Arthritis patient, talks about her journey navigating life with chronic illness. She discusses the importance of self-advocacy and communication, and how it helped her get accommodations at school.

Would you like to know how to support someone with chronic illness, or do you want to give advice to your loved ones about how to best support you? This blog post explains why coping with a chronic illness is difficult, how social support can benefit the patient, and 8 tips on how to show your support.

In this 20-minute seminar, Maayan Ziv, a young woman with muscular dystrophy, talks about what she wishes she knew about disability when she was younger. She delves advice on asking for help when you need it, being comfortable with vulnerability, finding your passion, and more. Whether you have a disability or a chronic illness, you will leave this talk feeling empowered.

In this blog post, a patient with chronic fatigue syndrome discusses her struggles with how her illness affects her body image throughout her teens and young adult life. She discusses weight fluctuations, alterations in skin appearance, and shying away from the camera. She gives 7 tips to help improve your self-esteem and confidence to be proud of the body you have.