Connecting rare disease patients globallyStart a community for a rare disease in partnership with us.
A safe, easy to use platform where rare disease patients, families and patient organizations can develop online communities and conversations across continents and languages. RareConnect partners with the world's leading rare disease patient groups to offer global online communities allowing people to connect around issues which affect them while living with a rare disease.
HOW IT WORKS
RareConnect is divided into disease specific online communities and discussion groups around topics of interest which may be disease specific or concern issues which touch on many disease areas.
RareConnect includes disease-specific online communities that enable people living with rare diseases to meet, share stories and learn from each other. Communities are created in partnership with patient groups who bring resources such as moderators, relationships with specialists and validated information. Find a community above using the search box or visit our list of communities.
RareConnect helps people who live with rare diseases from around the world to connect by providing different translation services. We provide an integrated machine-translation service but also an additional human translation service to ensure quality communication between members of the network..
Being able to share your story of living with a rare disease is an important step in connecting with others in a similar situation as well as allowing others to learn from your experience. RareConnect allows you to share your story and translates it into the many languages of the platform therefore allowing people from many other cultures to benefit from it..
Connect with other people living with rare diseases in order to share experiences, find support, ask questions and gain access to a rich network of supportive patient organisations..
In order to animate the many communities and discussions on RareConnect we organise regular online meetings which we record for subsequent viewing. These take many different formats for example they can be a discussion with a Healthcare Professional or a capacity-building session to help participants to build their knowledge and skills..
If there is not yet a community for your rare disease don't worry. You can ask a question or participate in discussions about other issues related to living with rare diseases. Read the most voted answers from the community, find others interested in the same topics of discussion as you are and find solutions to common problems based on the experiences of the community..
With so many vibrant rare disease communities on RareConnect we work with our patient organsation partners and leading experts to create polls which can give us an insight into the priorities of a given community. We then analyse and share the results of these polls with the community which can often help form new consensus on important issues leading to conclusive actions..
Beyond signing up and becoming a member of RareConnect there are many other ways in which you or your organisation can get involved in the platform.
RareConnect is a patient-led initiative. Patient organisations partner with EURORDIS, itself an international patient organisation, to create communities and provide moderators from within their network.
Each community on RareConnect is moderated by a person living with a relevant rare disease and linked to a trusted patient group. Furthermore all moderators are trained in the use of our online communities charter and supported on a daily basis by a team of community managers.
We are a non for profit organisation whose mission is to fight against the impact of rare diseases on peoples' lives. Learn more about EURORDIS' mission here
DATA PROTECTION COMPLIANT
RareConnect has declared its activity with the French Data Protection Agency's CNiL as compliant with the European Directive on Data Protection as implemented into French legislation.
All communication between you and RareConnect servers are encrypted using certified Secure Socket Layers (SSL) issued by Thwate. This means that even on public networks hackers cannot listen to or capture sensitive data.
Connect with others who understand you. Learn about research and the latest treatments. See what advocacy organizations are doing around the world. Find helpful resources and information from experts.
It is wonderful that we have this forum that we can communicate together in five different languages.
Angela Brook – Moderator of the Pseudomyxoma Peritonei Community
We would certainly encourage all Neurocanthocytosis patients to become a member of RareConnect, which is a better and more secure forum for exchanging ideas and advice with other patients.
Ginger Irvine - Moderadora de la Comunidad de neuroacantocitosis
I am so relieved, thankful, happy, very emotional right now! We have been praying for other parents who are in the same boat as us and until now have had nothing
Mother of Kolbe, a child with FOXP1 mutation
WHO WE ARE
EURORDIS, the European Organisation for Rare Diseases, is a patient-driven alliance of patient organisations and individuals active in the field of rare diseases. EURORDIS' mission is to build a strong pan-European community of patient organisations and people living with rare diseases, to be their voice at the European level, and - directly or indirectly - to fight against the impact of rare diseases on their lives.
HOW WE ARE FUNDED
Funding for the RareConnect project comes from several types of sources such as patient organisations (AFM-Téléthon), public funds (EAHC) and corporate sources. All funding supports the project as a whole and plays an essential part in launching and sustaining all participating rare disease communities.View our funders.
BUILDING A COMMUNITY OF TRUST
RareConnect is endorsed by the following partners who have partnered with us to promote the platform to their members. We recognise and thank their efforts.
OTHER EURORDIS WEBSITES
EURORDIS is a non-governmental patient-driven alliance of patient organisations representing 646 rare disease patient organisations in 60 countries.
The largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiative