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The Living Rare Estate, the first of its kind community-based stakeholder (CBS) collaboration model, is made possible by the Adults Living Rare Initiative. The Living Rare Estate provides a sustainable, supportive and empowering home for people Living Rare.

What is RAM House?

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A PLACE TO CONNECT


RAM House is the ONLY private online server currently hosting the Living Rare community. The community is international, but everyone speaks English within the server. 

A PLACE TO MEET AWESOME PEOPLE


Hosted by the Adults Living Rare Initiative, RAM House extends beyond the rare disease and medically complex communities into the neurodiverse and disability communities, uniting millions world-wide.  RAM House is a safe space where bullying is not allowed. Located within the Community Landscape of the Rare Disease Ecosystem, RAM House does not tolerate any of the territorial siloing practices (i.e. bullying, targeting, intimidating, etc.) often seen occurring within the Advocacy Landscape. As a result, while advocates, with lived rare disease experiences, active in the Advocacy Landscape are welcome, territorial siloing practices will result in all individuals involved being permanently being banned. (Just FYI, it saddens us that we have to have this disclaimer, but this is how the server remains a safe space for people to grow and evolve as professional activists without being bullied, targeted or intimidated by advocates that perceive their projects to be threatening to an advocacy-based silo).

SUPER PRIVATE - NO DATA MINING ALLOWED

RAM House is the first exclusive server dedicated to serving the communication and connection needs of the rare disease and medically complex community. There are so many online groups and communities set up throughout the internet, all designed to mine our stories, data, insights and more. We needed a place that we could call our own. A place we could communicate with each other without being listened to by data miners and people who aren't Living Rare. So the Adults Living Rare Initiative built RAM House. A fortress with various levels. As the community gets to know you, more rooms open up to you. As more rooms open up to you, more connections are made and more opportunities are presented.

TRULY INCLUSIVE COMMUNITY

It sucks that we even have to say this, but we have worked really hard to ensure that RAM House is a safe space for people of all abilities, cultural backgrounds, age, sexual preferences, genders, skin shades, hair textures, religious belief/affiliations and biological sex. If you are non-comfortable with people being open and honest about their lived experiences with discrimination, our community is not for you.

Interested in joining the Living Rare Community?

RAM HOUSE eligibility form