We appreciate the challenges of caring for a loved one with a RARE Disease. By definition, your disease is RARE, but that no longer means you need to feel isolated. We have found that nearly every RARE disease family deals with similar struggles identifying high-quality local resources, speaking to social services as if they have never dealt with a RARE disease before, establishing good school care and IEPs, finding good local medical specialists, struggling with equipment, nursing, & medication resources … and the list goes on.
Coming later in the first quarter of 2012, we will launch RARE Meetups to help you connect with others who can help you just by sharing their experiences – and whom you can help as well.
What kind of event is a RARE Meetup?
It can be as simple as a meeting at the local park, library, coffee shop, zoo, or school. Or you can be more elaborate and organize an event at your house, business, or a local theme park. The only limit is your imagination. The RARE Meetup platform will then do all of the heavy lifting to identify and invite local families who share similar desires, experiences, and needs as you. The invitations go out, RSVPs are taken, and the event organizer will be able to communicate with those attending prior to the event. After the event the system will allow you to all keep in contact with each other.
What about privacy?
The invitations go out honoring privacy for all parties. The organizer never sees the invitee’s name or email. RSVPs are taken, again privately, so that the organizer can make the appropriate arrangements. At the time of the event you will meet each other and only exchange as much information as you are comfortable with. Even with post-event communications, the system will not divulge your name unless you give it permission.
When is it coming?
The RARE Meetups platform is in development and is expected to go live late in the first quarter of 2012.
How Can I Participate?
Shortly before the platform goes live we will be asking you if you wish to receive RARE Meetup invitations for events in your local area that relate to you and your situation. You are by no means obligated to ever organize or attend an event. Your contact information and identity are never divulged unless you so request and you will be able to opt out at any time.