Together, We Are Stronger: Empowering Adults with Rare Conditions
By adapting work by patient representatives from TOFS, Max’s Trust, and VACTERL Association UK, ERN eUROGEN has developed a new patient flyer: “Patient Empowerment: A Journey from Isolation to Advocacy, Recognising Common Needs in Uncommon Conditions.”
We invite you to read and share the flyer, available here:
👉 Download the flyer (PDF)
The flyer shares the personal reflections and collective wisdom of Persons Living With a Rare Disease (PLWRD), showing how common experiences can emerge across uncommon conditions. It explores themes of isolation, identity, healthcare challenges, and—ultimately—empowerment through community and shared understanding.
This project was born out of a desire to give a voice to the rare disease community, which too often goes unrecognised, and to offer hope and solidarity to others on similar journeys. It stands as a testament to the power of listening, of finding your voice, and of building a community where everyone feels seen and supported.
By creating this resource, we hope to:
- Raise awareness of the lived experiences of rare disease patients.
- Encourage a more holistic, inclusive approach to lifelong healthcare.
- Offer a sense of solidarity to those who may feel isolated in their experiences.
- Inspire others to share their stories, connect with community, and step into advocacy.
Together, we can make space for every voice to be heard.
Below are further words from Kate Tyler, an ERN eUROGEN ePAG member, about the development of this important work:
A Journey: Isolation, Empowerment, and Advocacy by Kate Tyler
Living with a rare disease often means navigating a world that doesn’t fully understand your experiences. The isolation can be overwhelming—not just physically, but emotionally. The absence of recognition, the feeling of being dismissed, and the struggle to find someone who truly listens can be exhausting.
Our story is a testament to the power of empathy and the profound impact one person can have on another’s life.
Understanding VACTERL Association
VACTERL Association is a rare condition affecting multiple body systems (Vertebral, Anorectal, Cardiac, Tracheal, Esophageal, Renal and Limb). Many people with this condition face challenges in healthcare, daily living, and social acceptance. Through advocacy groups like ERN eUROGEN, TOFS, Max’s Trust, and VACTERL Association UK, we support others in finding their voices, expressing their needs, and sharing their lived experiences to help those with VACTERL Association and other rare diseases to live their best lives.
Building Community and Sharing Experiences
Last summer, a group of adults with VACTERL Association connected online to discuss how the condition has impacted their lives. Over six months, we built trust, listened, shared personal experiences, and valued each other’s perspectives and struggles.
When someone else validates your experience, it gives you the confidence to do the same for yourself. By working collaboratively to raise awareness of this rare condition, we all moved from feeling powerless to realising that our voices matter and that we are stronger.
We explored key topics, including:
- Coping with isolation and uncertainty about the future
- Navigating a healthcare system with limited awareness of VACTERL Association
- Overcoming bullying and social stigma
- Facing workplace challenges
- Managing continence, personal care, and chronic physical pain.
Our conversations highlighted common struggles across our uncommon conditions, providing valuable insights and solutions such as:
- Personal Care Management: Effective strategies for continence and self-care
- Community Support: Organisations offering activities for individuals with limb
- differences
- Holistic Healthcare: Finding specialists who address comprehensive care needs
- Complementary Therapies: To enable us to live our best lives
Bridging the Gap in Adult Healthcare
One of the greatest challenges we identified is the lack of support during the transition from paediatric to adult healthcare. Many feel abandoned when moving out of paediatric care, with little guidance on navigating adult health systems. The struggle to have our voices heard in medical decisions can be overwhelming, and frequently, we give up.
With Empowerment came Advocacy
There is no roadmap for this journey. From diagnosis to daily challenges, we face both moments of calm and times of uncertainty. Yet, through knowledge comes empowerment, and through shared experiences, we build strength and make connections.
- Embrace self-acceptance: Finding peace with our differences.
- Foster self-worth: Liking ourselves without relying on external validation.
- Collaborate: Sharing ideas, resources, and support.
- Guide others: Helping them navigate their journey and ensuring their voices are heard.
- Advocate for others: Becoming beacons of hope by living our best lives.
We aim to be beacons of hope, not just for teenagers and adults living with VACTERL Association but also for the parents who seek to understand and support their children. To raise awareness, foster a sense of belonging, and remind everyone they are not alone in this journey.
