WHAT WE DO
Support and Community
Finding a supportive HME network can be vital for individuals and families affected by the condition. It is often the case that those with HME have never met anyone else with the condition when they join HME – The New Generation. Through our organised support groups both in-person and online, feelings of isolation are reduced through shared experiences, information and coping strategies. Many of our members refer to the Community as their ‘HME Family’ and this sense of belonging gives all ages confidence that they are not alone and crucially are amongst people who understand day-to-day living with HME.
Join our Facebook group or email us on [email protected]
Awareness and Advocacy
Raising awareness of HME is crucial for improving understanding and support for affected individuals. Advocacy efforts can focus on educating the public and medical professionals about the disorder, promoting research for better treatment options, and ensuring that individuals with HME of all ages receive compassionate care tailored to their unique needs.
Events and meet-ups
We believe in the power of community and connection. That’s why we host an annual Fun Day Out, where families and friends of those affected by HME can come together for a day filled with joy, laughter, and unforgettable memories. This event provides a welcoming atmosphere where everyone can relax, have fun, and share experiences with others who truly understand their journey. In addition to our flagship event, we organise smaller meet-ups across the country throughout the year. These gatherings offer a supportive environment for families to connect, share stories, and build lasting friendships. Children can meet peers who are just like them, fostering a sense of belonging and reducing feelings of isolation. Together, we create a network of support that empowers families to thrive.
We also organise conferences occasionally, with a professional medical speaker programme, activities for our younger members and a combined social event. These opportunities are designed to inform and educate not only those affected by HME, but also the general public and the medical professionals.
Care packages
We understand that hospitalisation can be a challenging and overwhelming experience for young adults and children. To provide comfort and support during these difficult times, we put together thoughtful Care Packages filled with items that bring joy and solace. Each package is carefully curated with age-appropriate gifts, including cozy blankets, fun activities, books, and personal care items.
Our goal is to brighten their days and remind them that they are not alone in their journey. These Care Packages serve as a tangible expression of our love and support, bringing a smile to their faces when they need it most. We believe that small gestures can make a significant impact, and through our Care Packages, we aim to uplift spirits and foster a sense of hope and connection, even from a distance.