Join Rare Diseases Ireland and the many rare disease patient organisations in Ireland in raising awareness of the challenges of living with a rare disease. Speak with you local TDs, Councilors and MEPs, share information on social media, bring literature to your physician, work with your local schools, and contact your local newspaper.
We can all be educators and advocates!
RDI is a non-governmental patient-driven alliance of patient organisations representing rare disease patients across Ireland. RDI is working to build a strong community of rare disease patient organisations.
Membership Benefits of RDI include:
Are you interested to become a mamber? Review the membership criteria and complete the application form. If you have any questions don’t hesitate to ask us: advocacy@rdi.ie
Rare Barometer Voices is a EURORDIS initiative that aims to make the voice of rare disease patients stronger. The objective is to transform your opinions and experiences about topics that directly affect you into figures and facts that can be shared with a wider public.
Requests for patient perspectives in health, research and social policy-making are on the rise as the value associated with evidence-based programmes or policies are increasingly recognised and required by all stakeholders. To best respond to this and achieve a high quality evidence-base from people living with a rare disease, the EURORDIS Rare Barometer Programme was established to gather the perspectives of patients, parents, siblings or other family members, patient representatives and carers.
We ALL rely heavily on patient engagement to inform sound policy from the patient perspective.
Rare Barometer Voices is a community of people living with a rare disease who are willing to participate in EURORDIS-Rare Diseases Europe surveys and studies. Patients, parents, siblings or other family members, patient representatives and carers can register to share their experiences and thoughts.
Learning that you or a loved one has a rare or undiagnosed condition can be scary, confusing, isolating, and often forever life-altering.
“Where should I begin? How do I communicate what is going on with my friends, family, or healthcare providers?”
Many within the rare disease community do not know how great an impact they can have by sharing their story. Sharing a rare disease story may feel like one more thing to worry about on a growing task list for managing a rare disease. While it’s common for novice and even experienced storytellers to have doubts about sharing a personal experience, this should not overshadow the importance of storytelling for the rare disease community.
Many people within the rare disease community have searched long and hard for a story that resembles their own, but with little success. The isolated nature of many rare diseases makes it essential to speak up. Your individual story could be invaluable to someone still searching. It’s also an important way to raise awareness about a disease and can help researchers, doctors, and donors understand the human dimension of the work they do and support. With the majority of healthcare professionals unfamiliar with identifying and treating patients with rare diseases, most patients and their family members must rely on themselves or other patients and caregivers to learn about their own conditions. You are the expert!
By telling a story, you can help shed light on a condition’s symptoms, prognosis, and other details for those still searching for the correct diagnosis or for someone who knows their disease firsthand. Medical terminology and data, though important, can obscure what it means to live with a disease and make it difficult for most people to relate. Personal stories frame our individual rare experiences in a way that lets others connect. Finding common experience can break down feelings of isolation and build supportive networks. Outside the benefits to the larger rare disease community, you may also be able to save time and frustration by not having to continuously retell your medical history to others.
By taking time to prepare your story you can take control over the story you choose to communicate. Capturing our stories gives us a chance to reflect and process what we’ve gone through. We reclaim lost memories, create new meaning around the journey, and take ownership. Many storytellers in the rare disease community have found the process promotes healing. Telling your story establishes a valuable record for you, your family, and the greater community.
Share your story with us. Your story may be written or a picture collage or a video – use whatever medium you are most comfortable with. Please review and complete our ‘Share Your Story’ form and submit completed form with your story.
Global Genes have developed a toolkit to help you to develop your story – Using Storytelling to Raise Awareness for your rare Disease.
Please remember that we can not post material that may be deemed offensive or abusive.
Here are stories from some of the people living with a rare disease in Ireland.
RDI has unpaid internship opportunities throughout the year. An internship with RDI offers students and recent graduates an opportunity to apply what they are learning in a fast-paced, mission-driven environment. Areas of opportunity include public policy and advocacy; marketing, communications, web development & graphic design; educational initiatives, membership, event management, fundraising, development and finance.
An internship at RDI will provide you with the opportunity to learn about the rare disease voluntary and healthcare sectors in Ireland and the challenges they are facing. There is tremendous collaboration across all stakeholder in the rare disease community in Ireland and you should have the opportunity to engage with varied stakeholders depending upon the specifics of the role that you choose to undertake.
Please email your resume, along with a cover letter specifying your area of interest the weekly schedule, start date and duration that you are available, to advocacy@rdi.ie if you are interested in interning with RDI,