Jacob's Hugs Registry

So many in the scleroderma community have become friends. Jacob’s Hugs Registry feels this is a wonderful community that should be able to support one another in our times of need.

Over the years many patients have become sick or have passed away without the community having the means to get information or updates about their scleroderma friends' status. This registry is designed to allow patients to designate their chosen family member or friend to communicate with the scleroderma community in a structured way.
The hope is to provide patients with a sense of security that all their scleroderma friends will receive accurate information from one reliable source. It also helps patients' friends and family to feel secure with whom the patient's information is being shared with. 

Jacob’s Hugs Registry would like to begin a national scleroderma patient emergency registry. Each patient can provide their name, type of scleroderma, phone number, email and physical address. Then they will provide two emergency contacts phone number and email that can be notified in an event of a hospitalization/emergency. The collected information will only be used to update the scleroderma community on Jacob’s Hugs Registry social media platforms. 

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To complete registration click on the button on the top to be taken to the Google Form for registration.