“Secret” Facebook HLRCC Group
It is important that you understand that membership of this Facebook Group is controlled by administrators in order to protect your privacy. “Secret” means that all posts within the group can only be seen by group members, and names of all of its members are not externally visible. There is no visibility to search engines and nothing on your Facebook Timeline.
Unless you are an existing family member, admittance requires you to submit relevant information about your reasons for wishing to join the group. This information will be treated as strictly confidential.
This can be done by emailing hlrcc@vhl.org from the email account that is connected to your Facebook account.
If your request is acceptable you will receive an email from Facebook with a Facebook link inviting you to join the group. Using this link will enable your admission to the group to be finalized.
You will find the group is very welcoming and friendly with over 300 members around the world: United States of America, Australia, Brazil, Canada, France, Greece, Italy, The Netherlands, New Zealand, Norway, Spain, Sri Lanka, United Kingdom. Links are to other VHL supportive sites which may support HLRCC and FD.
So please join us if you or a family member has HLRCC or Fumarase Deficiency.
The Facebook platform has some limitations for our needs so we are also strongly advising people to join the HLRCC Community on Smart Patients“
