Alliance for Cryoglobulinemia Support Network
A Secret Facebook Support Group
RareConnect Cryoglobulinemia Community
Alliance for Cryoglobulinemia SECRET Facebook Support Group
- In a Secret group, admins must approve members and only group members can see posted content. Posts are searchable by members in the group, but not on public threads. We keep our privacy settings to ‘Secret’ because we have found that people, like yourself, do not want their medical information shared publicly. Peer to peer support thrives when people feel comfortable, safe, and with others who understand. The Secret Group is not searchable on Facebook and is only for people with Cryo or their immediate caregiver/family. If you would like to join the SECRET Support Group……..
- Send a Friend Request on Facebook to Marianne Vennitti or Eileen Propp with a message saying Cryo Patient or:
- Send and email to Marianne, firstname.lastname@example.org or Eileen, email@example.com. Please indicate Cryo Patient in the Subject Line.
Alliance for Cryoglobulinemia Closed Group Facebook Group
- In a closed group, admins must approve members and only group members can see posted content. Posts are searchable by members in the group, but not on public threads. If you would like to join the CLOSED Group please……
- Send a Friend Request to Marianne Vennitti or Eileen Propp with a message saying, Cryo Patient and ask to join Cryoglobulinemia-Alliance for Cryoglobulinemia Facebook Closed Group.
Alliance For Cryoglobulinemia Facebook INFORMATION AND NETWORK Page
- Our Alliance for Cryoglobulinemia Public Facebook page is for general information purposes in regards to Cryoglobulinemia, Vasculitis and Rare Disease Advocacy.
RareConnect: Connecting Cryoglobulinemia Patients World-Wide.
Share Your Cryoglobulinemia Story in English on the RareConnect International Cryoglobulinemia Community or in your native language of French, Dutch, Italian, Spanish.
The Alliance for Cryoglobulinemia has partnered with the European Organization for Rare Diseases, EURORDIS, to create an international online community for people living with cryoglobulinemia and their loved ones. Through the community on RareConnect, people living with cryo can communicate, sharing experiences and information in a safe, moderated online forum.
How Do I Register ?
- It’s easy, quick and safe. First, go HERE or Connect with your Facebook or Google account, OR create a new, anonymous username as long as you follow our Online Communities Charter.
- After you register you will be sent a confirmation email to validate. Check your spam folder in case it ended up there. Click on the link in that email and validate your address.
- Now you’re ready to complete your profile and introduce yourself on the Forum where you can begin connecting with others from around the world who understand.
The Alliance for Cryoglobulinemia is a global network of people, living with Cryoglobulinemia.
You are Rare But You Are NOT Alone.