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Home » Virtual Communities

Virtual Communities

RareConnect: Connecting Rare Disease Patients Globally

A safe, easy to use platform where rare disease patients, families and patient organisations 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.

 

RareShare

Even though there are 7,000 known rare conditions, many of the 300 million affected patients around the globe feel alone. RareShare was founded in 2008 to give these people and their loved ones a sense of community; a place to sympathise, celebrate, and share their experiences and expertise, together.

  • Create a sense of community for those affected by rare disorders
  • Communicate with others that are affected by the same condition
  • Contribute condition-related information, experiences, support, and resources

rareshare.org

 

Inspire

Finding other people with the same diagnosis can be difficult, especially for people with rare diseases or a specific cancer mutation (e.g. ALK mutation in Non-small cell lung cancer or triple negative breast cancer). Inspire has created a vibrant community of support groups with the most trusted partners.  People feel safe and are able to be authentic, share and explore feelings and learn about their medical journey from people who have "been there."  Through the trust built in community and the power of relationships, our members become empowered as patients and are much more engaged in their health decision process.

www.inspire.com/join/partial

 

MakingContact.org: Linking Families with Disabled Children

An online community, where you can:

  • chat and get support from parents who have been there
  • find local support, ask questions and talk to others who run support groups
  • find information, support and other parents of children with the same condition as yours
  • help build a collection of useful links, research and information for each condition
  • give feedback and help it develop

makingcontact.org

 

MyGene2: Share, Unite and Discover

MyGene2 is a portal through which families with rare genetic conditions who are interested in sharing their health and genetic information can connect with other families, clinicians, and researchers. The genetic cause of most rare conditions is unknown and as a result, most families who undergo exome sequencing or whole genome sequencing do not receive a diagnosis. By sharing information through MyGene2, a family can help and even participate in the discovery of new genetic conditions and the genes underlying these conditions.

Families with rare genetic conditions may use MyGene2 to search for and contact other families who have the same condition or mutations in the same gene in order to share information and offer support. Families have the option to make the information they submit to MyGene2 available to anyone visiting the site (i.e., public) or available to only registered users who have also contributed data to MyGene2. Families also have the choice of whether or not they want to be contacted by clinicians and researchers or other families.

Create a family profile to connect with others.

mygene2.org

 

GenomeConnect: The ClinGen Patient Portal

GenomeConnect is a patient portal, or registry, that is working to build the knowledge base about genetics and health that will allow researchers and doctors to study the impact of genetic variation on health conditions, which is key to the development of new treatments and therapies. A recently added new feature allows participants to connect with one another to find others with a similar diagnosis, age, gender or geography.  

www.genomeconnect.org

 

Smart Patients

An online community where patients and their families learn from each other.

www.smartpatients.com

 

ARCAN: Unique Individuals Uniting as One Group

ARCAN is an Australian organisation created by parents, for parents and the community; to raise awareness for rare chromosome disorders.

Enter your details in the membership section to connect with other families.

www.arcan.org.au

 

ThinkGenetic

Share your story with others in the ThinkGenetic community and connect with people around the world. 

www.thinkgenetic.com/share-your-story

 

Rare Disease Day

Share your story and connect with others on the website.

 

e-Patient Dave's listings

www.epatientdave.com/communities 

 

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