HEREDITARY HEMORRHAGIC TELANGIECTASIA FOUNDATION
POLICY GOVERNING INTERACTIONS BETWEEN PRIVATE ENTERPRISE AND HHT SPONSORED CONFERENCES, NEWSLETTER, AND WEBSITE
The Hereditary Hemorrhagic Telangectasia Foundation (HHTF) welcomes interactions with private enterprise which support the goals of the Foundation. The HHTF sponsors partially or completely; conferences for patients and scientists, a newsletter, and a website. To ensure continued trust by HHTF members in the information made available to them at meetings, in the newsletter, and on the website, the foundation has developed guidelines for interactions between the foundation and private enterprises.
The HHTF will acknowledge publicly corporate contributors to HHTF sponsored conferences. At HHTF sponsored patient conferences these acknowledgements will be in the forms of tastefully written acknowledgements in the written program and verbally from the podium. The HHTF will also acknowledge private enterprise sponsors at receptions related to conferences and fund raisers.
Companies making medical devices and medications, which may be helpful to persons with HHT, may make advertising claims of benefit to persons with HHT at the meeting provided there is scientific evidence that such is the case. Scientific evidence is defined as at least one placebo controlled trial in the case of a medication. Medical device makers may make such claims if, in the judgment of SMAB members with expertise in the area in question, and in the absence of scientific evidence to the contrary, the device is of benefit. If companies wish to make claims of benefit to persons with HHT when scientific evidence as defined above is not available, the HHTF will ask the company to include a disclaimer that the medication or device has not been proven to be of benefit to HHT patients.
Booths/exhibits sponsored by private enterprises that focus on physicians and scientists attending the meetings are welcome. However they must adhere to the evidentiary standards noted above.
Booths/exhibits sponsored by private enterprise that focus on HHTF members are welcome. If they wish to make claims of product benefit to HHTF members, they must adhere to the evidentiary standards noted above. The HHTF will make every effort to maintain the privacy of its members by preventing solicitation of personal information at booths/exhibits at members’ meetings. To this end, exhibitors will be allowed to give written information to HHTF members that offers the member the option of contacting the private enterprise later and voluntarily revealing any personal information that they wish to divulge, but will not be allowed to ask directly for personal member information at the meeting. Exhibitor & Corporate Interaction Policy
The HHTF will acknowledge in its newsletter private enterprises that support the foundation. Space and manner of presentation will be determined by the newsletter editor. Claims of benefit of products made by private enterprise may appear in the newsletter, but must be supported by the criteria noted above.
On the website, a written acknowledgement of support by private enterprises will be placed on the main webpage, which refers the page viewer to specific details of the supporting organization on a subsequent page. This information may include the name of the company, its address, phone number and website.
It is the policy of the HHTF not to endorse or support products made by private enterprises that support the foundation. This policy will be made known to these supporters, and to the members of the HHTF.All decisions regarding medical care related to products of supporting private enterprises should be made only after advice and consultation with the member’s physician.