Shining a Light on Rare Disease Day & Patient Stories

Every day, families with children facing rare diseases encounter challenges that many of us can barely imagine. From the high costs of specialised therapies to essential equipment that makes everyday life manageable, the journey can be emotionally and financially overwhelming. That’s where Tree of Hope steps in to make a difference.

Why Rare Disease Day Matters

Rare diseases, by definition, impact a small number of individuals, but their effects can be profound. For children, these conditions often involve complex medical needs, delayed diagnoses, and limited access to appropriate treatments. They may face significant physical and developmental challenges, requiring coordinated care that includes therapies, adaptations, and equipment.

Recognising Rare Disease Day allows us to shine a spotlight on these often-overlooked conditions that come with great challenges and highlights the importance of early intervention, ongoing support, and vital research to improve the lives of those affected.

Rare Disease is an opportunity to share the stories of families navigating the uncertainties of rare diseases, fostering understanding, reducing stigma, and the impact the right support can have for improved care.

How Tree of Hope Supports Families with Rare Diseases

Tree of Hope provides families with the guidance and support to drive successful fundraising campaigns to pay for therapies, adaptations and equipment they need to support their children’s health and quality of life. By helping families raise funds for medical treatments and healthcare services not freely available through the NHS or social care, we ensure children have access to life-changing interventions.

Since 1992, we have supported thousands of families across the UK and Ireland by offering:

• Fundraising guidance

• Campaign development

• Financial management

• Charity registration (including Gift Aid)

• Emotional support

Through our work, families gain access to essential resources while becoming part of a supportive community that understands their unique challenges.

Children We Have Helped: Emmie, Yasmina, and George

Tree of Hope has helped hundreds of families achieve incredible outcomes for their children. Here are just a few examples:

• Emmie: Emmie has Kniest Dysplasia, a rare condition that affects bone growth. Tree of Hope have helped and continue to help her family raise funds for home adaptations, therapies, and equipment, allowing Emmie to move freely and live as independently as possible in her own home.

• Yasmina: Yasmina lives with Friedreich’s Ataxia, a progressive condition that affects her mobility and coordination. With Tree of Hope’s support, her family raised funds for therapies that enable her to fulfill her dream of horse riding which she now competes in and hopes one day to compete in the GB Olympic team.

• George: George has Kabuki Syndrome, a rare genetic disorder. Tree of Hope are supporting his family to access therapies and equipment not available through the NHS, greatly improving his quality of life.

These stories demonstrate the vital role Tree of Hope plays in supporting families with rare diseases where public healthcare and social care services fall short.

How You Can Get Involved

If your family is in need of support or assistance while living with a rare disease, Tree of Hope is here to help. Please don’t hesitate to reach out to our team to learn more about how we can support your journey by booking an appointment with one of our Family Support Officers. 

For those looking to make a difference, you can:

• Donate to support families like Emmie’s, Yasmina’s, and George’s

• Share our mission on social media to raise awareness using the icons below for Rare Disease Day.

• Fundraise to support your own child's needs with Tree of Hope's to help. If you have questions to ask, we're happy to help, so please book a call with our team today to find out more. 

Making a Real Impact

By collaborating with Tree of Hope, families not only gain access to the funds they need but also become part of a compassionate community working to improve the lives of children with rare diseases which we strive to continue to learn about.

Join us this Rare Disease Day and beyond in making a real difference for families across the UK and Ireland.