HLRCC Family Alliance

This week’s spotlight member at NORD is the HLRCC Family Alliance. Their main goals include:

• To teach patients how to take control of their own health once they are diagnosed.

• To provide medical professionals with a convenient summary of the latest information available on HLRCC, and how best to manage the health of a patient with HLRCC.

• To communicate the importance of both screening for kidney tumors and conducting genetic testing for blood-related family members.

• To offer doctors and patients resources for clinical research, tips for efficient and safe screening, and the most up-to-date information possible regarding current research and statistics for HLRCC.

• To support those HLRCC families who have a child with Fumarase Deficiency (fumaric aciduria).

 

We were happy to ask the Vice Chair of the Board of Directors at HLRCC Family Alliance the following questions:

There is a great sense of achievement and purpose in supporting patients with a rare disease such as HLRCC. These patients initially feel extremely isolated and vulnerable when diagnosed and have difficulty sometimes in getting the correct protocols used for screening and treatment from physicians who have little knowledge of the disease. It is humbling to know that our organization provides the support needed for patients to become their own advocates.

We have found that the patient community values the provision of a private forum to share the commitment of others who have had similar experiences  living with this rare disease. Also, this community values the access that we provide to expert knowledge provided by the medical council at HLRCC.

HLRCC Family Alliance’s initial challenge was building up a sufficient number of patients in a forum to maintain a level of ongoing communication. There was the challenge of creating our own professional looking website to give visibility and credibility of the HLRCC Family Alliance. We also worked hard to create the HLRCC Handbook for the condition, which was assisted by the world’s expert medical professionals and with the backing of the VHL Alliance. We were fortunate to work with VHL Alliance and benefited considerably from their support in terms of their infrastructure and mentoring. At the same time though, it was a challenge in its own way own way to maintain a level of independence.

We have found that VHL Awareness Month this past May was very succesful!