Global Genes asked Global Advocacy Alliance members to share their successes – whether it is meeting an organizational goal, kicking off a campaign or event, conducting great work in their community, participating at a summit, or collaborating with another organization. See what the Birt-Hogg-Dubé (BHD) Syndrome Foundation is celebrating!
Rachel Miller Stainsby
Birt-Hogg-Dubé Syndrome
“The BHD Foundation is excited to announce ERN (European Reference Network)’s first definitive European clinical guidelines for diagnosis and management of Birt-Hogg-Dubé syndrome. For many years BHD patients and their clinicians have not had clear information on how regularly they should be attending BHD check-up and medical care appointments. This has led to differing standards of care between patients in different countries, and anxiety surrounding questions like how often they should be receiving life saving kidney cancer screening. They are a clear set of clinical guidelines for diagnosing and managing BHD which is recognised across Europe. The ERN GENTURIS BHD guidelines advise European clinicians by (1) Setting clear diagnostic criteria for when to test a patient for BHD (2) Setting a lifelong standard of care for BHD patients.”
Read more about this achievement on the BHD Foundation website!
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