Meet Vasco, Jelena, Wafic, Nada, Tshepiso, and Taka: our Rare Disease Day 2022 superheroes!

Although they live with different diseases, come from different countries, and face different barriers, our heroes have lots in common: a shared passion for life, shared challenges and frustrations, and a shared drive for change. We are thrilled to introduce them as the stars of the 2022 global campaign for Rare Disease Day. Read more about our heroes below:

22-year-old Nada from Egypt is living with epidermolysis bullosa, a rare disease that affects the skin.

Throughout her life, she has overcome the challenges of social integration, despite being bullied at school and, sometimes, unable to attend classes due to her condition.

Nada is determined to spread awareness about Epidermolysis Bullosa and to help fight against social discrimination for those living with the disease.

For over 20 years, Tshepiso from Zimbabwe had been living with an undiagnosed bleeding disorder.

Three years ago, she was finally diagnosed with Von Willebrand disease – but even today, Tshepiso’s access to treatment is limited, as she does not know the sub-type of her disease.

With the love of her family, friends, and now her 1-year-old baby boy, Tshepiso never loses hope and always stays positive about the future.

Jelena from Serbia was diagnosed with cystic fibrosis when she was a baby, but ever since she has been determined not to let it to hold her back. She likes traveling, walking, and being outdoors with her husband and friends.

Jelena is a dedicated patient advocate and the current Vice President of the Association for Help and Support to people with cystic fibrosis of Serbia. 

Meet 20-year-old Wafic from Lebanon, who is living with Duchenne muscular dystrophy, a rare and incurable genetic disease.

Wafic believes that much more needs to be done for people who have rare diseases and movement disorders including improved accessibility to school, work and public places.

He says: “Access to medical care is a basic right and governments should better support people living with rare diseases.”

Taka from Japan was diagnosed with retinitis pigmentosa, a rare eye disease, when he was seven years old. 

Daily activities are often more difficult for Taka than for most people. Crossing the road, using public transport or going shopping can sometimes present challenges.

But Taka chooses to live every day with optimism and positivity, supported by the love and kindness of his family and friends.

Vasco from Peru is just like any other 6-year-old boy: he loves to play, paint, dance and read. But most of all, he loves spending time with his family.

Vasco is living with Gaucher’s Disease, which sometimes makes it difficult for him to have fun with other children his age.

But Vasco’s bravery despite the challenges he faces inspires those around him every day.

Coming soon…the official Rare Disease Day 2022 video featuring the inspiring stories of Nada, Tshepiso, Jelena, Wafic and Vasco!

We would like to thank all our superheroes for sharing their stories and helping to raise awareness this Rare Disease Day.

Do you know a hero living with a rare disease like Taka, Nada, Tshepiso, Jelena, Wafic and Vasco? Participate in raising awareness for people living with a rare disease and Share their story today!