{"id":58523,"date":"2014-05-14T16:25:08","date_gmt":"2014-05-14T20:25:08","guid":{"rendered":"https:\/\/rarediseases.org\/vhl-alliance-and-nord-launch-new-international-databank\/"},"modified":"2022-12-01T11:35:10","modified_gmt":"2022-12-01T16:35:10","slug":"vhl-alliance-and-nord-launch-new-international-databank","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/vhl-alliance-and-nord-launch-new-international-databank\/","title":{"rendered":"VHL Alliance and NORD Launch New International Databank"},"content":{"rendered":"

To Support Research and Gain a Better Understanding of VHL and other Forms of Cancer, Patients and Medical Experts Around the World will Share Critical Information in Search of a Cure!<\/em><\/em><\/strong><\/p>\n

The VHL Alliance<\/a>, a nonprofit advocacy organization supporting patients and families affected by von Hippel-Lindau, has launched a new international databank aimed at better understanding this disease and other forms of cancer.<\/p>\n

The new Cancer in our Genes International Patient (CGIP) Databank at www.vhl.org\/databank<\/strong> will allow patients around the world to share relevant data, connect with researchers, and support research on how variables such as diet, exercise and even oral health may affect\u00a0 disease progression.<\/p>\n

The VHL Alliance has created this databank in partnership with the National Organization for Rare Disorders (NORD), which represents all Americans with rare diseases.\u00a0 This is the first<\/strong> of many such disease-specific databanks that NORD will be creating.<\/p>\n

\u201cVHL Alliance is thrilled to partner with NORD in launching the Cancer in our Genes International Patient Databank.\u00a0 The CGIP will provide a complete \u2018picture\u2019 of each patient\u2019s experience with these diseases, making it possible to assess the effects of diet, exercise, environment and other variables,\u201d said Ilene Sussman, executive director of the VHL Alliance. \u201cIt will also provide a safe platform for patients and researchers to connect and confidentially exchange data in order to accelerate treatments and a cure.\u201d<\/p>\n

NORD President and CEO Peter L. Saltonstall said VHL Alliance\u2019s databank provides what is widely recognized as one of the greatest needs of the rare disease community \u2013 natural history data to help medical researchers better understand how diseases develop and progress over time.<\/p>\n

\u201cWe believe the CGIP is an important new resource for patients and researchers, and we look forward to offering use of our new platform to other rare disease patient organizations,\u201d Saltonstall said.<\/p>\n

\u201cSince VHL patients battle a series of tumors throughout their lives, they are an ideal population for studying tumor growth and identifying ways in which a patient\u2019s lifestyle or environment may affect the progression of the disease,\u201d says Sussman.<\/p>\n

And, while von Hippel-Lindau disease is rare, the VHL gene is involved in many other forms of cancer. The new database will include data from patients with several other rare forms of genetic cancer, and could ultimately influence the treatment of many other types of cancer including common forms.<\/p>\n

In forming this first-ever database, the VHL Alliance partnered with medical experts from around the world. In addition, the VHL Alliance and NORD consulted with the FDA on questionnaire design to help future development of promising therapies.<\/p>\n

While only about 1 in 32,000 Americans have VHL, the disease has been featured on Grey\u2019s Anatomy.\u00a0 Also, \u201cThe Voice\u201d recent contestant \u201cEmily B\u201d shared with the nation how she has been affected by this rare disease. In addition, best-selling author Tom Rath, who was diagnosed with VHL at age 16, has served as a vocal advocate for the patient community. His most recent book — Eat. Move. Sleep. How Small Choices Lead to Big Changes<\/em> — was published in October 2013.<\/p>\n","protected":false},"excerpt":{"rendered":"

To Support Research and Gain a Better Understanding of VHL and other Forms of Cancer, Patients and Medical Experts Around the World will Share Critical Information in Search of a … <\/p>\n

Continue reading “VHL Alliance and NORD Launch New International Databank”<\/span><\/a><\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_relevanssi_hide_post":"","_relevanssi_hide_content":"","_relevanssi_pin_for_all":"","_relevanssi_pin_keywords":"","_relevanssi_unpin_keywords":"","_relevanssi_related_keywords":"","_relevanssi_related_include_ids":"","_relevanssi_related_exclude_ids":"","_relevanssi_related_no_append":"","_relevanssi_related_not_related":"","_relevanssi_related_posts":"","_relevanssi_noindex_reason":"","_price":"","_stock":"","_tribe_ticket_header":"","_tribe_default_ticket_provider":"","_tribe_ticket_capacity":"","_ticket_start_date":"","_ticket_end_date":"","_tribe_ticket_show_description":"","_tribe_ticket_show_not_going":false,"_tribe_ticket_use_global_stock":"","_tribe_ticket_global_stock_level":"","_global_stock_mode":"","_global_stock_cap":"","_tribe_rsvp_for_event":"","_tribe_ticket_going_count":"","_tribe_ticket_not_going_count":"","_tribe_tickets_list":"[]","_tribe_ticket_has_attendee_info_fields":false,"footnotes":""},"categories":[192,193],"tags":[203,381,261,382,225,383,384,385,386],"class_list":["post-58523","post","type-post","status-publish","format-standard","hentry","category-patients-members","category-research","tag-cancer","tag-cancer-in-our-genes-patient-databank","tag-mary-dunkle","tag-natural-history","tag-nord","tag-research","tag-tumors","tag-vhl-alliance","tag-von-hippel-lindau"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/58523","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/comments?post=58523"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/58523\/revisions"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=58523"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=58523"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=58523"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}