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Sep. 21, 2015

TOPIC: Featured News

HLRCC Family Alliance

Posted by Christina Jensen
For Web
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:

1.) What does it mean to you personally to be a patient organization serving the rare community?
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.
 
2.) What do you find your patient community values most from your organization?
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.
 
3.) What are some of the challenges your organization has faced?
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.
 
4.) What’s been your most successful awareness campaign and/or fundraising event?
We have found that VHL Awareness Month this past May was very succesful!

Address

2001 Beacon Street, Suite 208
Boston, Massachusetts 02135 USA

Phone

617-277-5667 ext. 709

800 Number

800-767-4845 ext. 709

Email Address

hlrcc@vhl.org

NORD is happy to be putting the spotlight on HLRCC Family Alliance this week. You can look forward to social media posts on our Facebook and Twitter accounts about HLRCC Family Alliance throughout the week! Member Organizations to NORD interested in Member Spotlight should contact their regional membership managers at NORD to learn more! 

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