What is eczema?
- Eczema is an umbrella term for a group of autoimmune diseases that affect the skin. The most common and chronic form of eczema – also known as atopic dermatitis – typically causes patches of dry, itchy skin that may worsen and can erupt into a rash when scratched.
Patients also often endure a significant negative impact on their emotional wellbeing, from an inability to sleep, as well as associated feelings of social exclusion and depression or anxiety.
What is AltogetherEczema?
- AltogetherEczema is a growing movement for the global eczema and atopic dermatitis community, aiming to identify critical issues, share knowledge and work towards change.
AltogetherEczema.org serves as the central hub, providing key resources and gathering insights to inform collective advocacy.
Who created AltogetherEczema?
- AltogetherEczema was created by the International Alliance of Dermatology Patient Organizations (IADPO, also known as GlobalSkin), a not-for-profit organization. IADPO is a unique global alliance, committed to improving the lives of skin patients worldwide. We nurture relationships with members, partners and all involved in healthcare – building dialogue with decision-makers around the globe to promote patient-centric healthcare. Learn more about IADPO.
Why has IADPO launched AltogetherEczema?
- IADPO has launched AltogetherEczema,org to provide a central online community, allowing patients, caregivers and patient advocates to:
- Directly share experiences of life with eczema or atopic dermatitis, as well as aspirations for the future
- Interact with content and features to explore key issues for the community; and
- Utilise tools to campaign for changes that will improve the lives of those living with eczema and atopic dermatitis
- AltogetherEczema is a growing movement for the global eczema and atopic dermatitis community, aiming to identify critical issues, share knowledge and deliver action to improve lives. The movement aims to:
- Unite people living with eczema and atopic dermatitis, as well as caregivers, around shared experiences and hopes for the future;
- Provide a central home for people all around the world – patients and patient leaders (advocates) – to identify common issues, share information and insights, and work together to find solutions; and
- Build/enhance advocacy skills amongst patient leaders, and enhance capacity to aid in-country, regional and global mobilization.
How was AltogetherEczema funded?
- Building the AltogetherEczema.org online platform was made possible through a joint unrestricted educational grant from Sanofi Genzyme and Regeneron.
What is the purpose of the survey on AltogetherEczema.org?
- We want to know what issues matter to people with eczema or atopic dermatitis, how this condition impacts life and what barriers are encountered. We are asking the community to share answers to a few key questions to help start a new global conversation that can help us to bring about positive change for people living with the condition.
- The survey will take approximately five minutes to complete on AltogetherEczema.org and, once submitted, you can view your answers in real-time and compare these with the rest of the global community!
How will the survey data be used?
- Your responses will be anonymous to protect your privacy; all data will be under the care of the International Alliance of Dermatology Patient Organizations. The aggregated results will be shown visually on the AltogetherEczema.org website. You will be able to compare your answers with the results of others and filter by demographics. You are not required to disclose your name to take the survey and other participants will not be able to see your identity or individual answers. No information will be tracked back to the individual.
- You have:
- The right to withdraw at any time during your participation of the survey.
- The right to refuse to answer any questions at any time by simply clicking the >> button.
- The right to withhold information.
How can I share the survey with others?
- Encouraging others to participate in the AltogetherEczema survey will help to bring about positive change to the eczema and atopic dermatitis community. You can share the survey by using the social media icons adjacent to the survey.
How do I get involved in my local patient association?
- Getting involved in your local patient association will help connect you with people who are facing some of the same challenges as you. By reaching out to a local patient association, you can also learn more about your condition.
- Find your local patient association using the directory available here and contact them directly.
What is the purpose of the “share your story” section of the site?
- AltogetherEczema has created this space to allow you to share your experiences of life with the condition and what matters to you.
- Living with eczema or atopic dermatitis can be incredibly challenging, but you are not alone. By sharing your story, you will bring comfort to other community members, while helping to build a case for change. The more stories you share, the bigger the AltogetherEczema movement will grow.
How do I remove a story that I uploaded to the site?
- If you would like to remove your story from AltogetherEczema.org, email us at firstname.lastname@example.org and we will have this removed as soon as possible.
Didn’t find what you were looking for? If you have any questions or comments, you can get in touch with the team at email@example.com and we will respond as soon as possible.