Together We Thrive

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.

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!

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.

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!

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 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!

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.

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.

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.