The FDMAS Alliance respects the privacy of visitors to its website and recognizes its responsibility to keep confidential any personal information that visitors may provide.
Information Collection and Use
The nature of the website visitor information we collect is generally of two types: (1) website traffic, and (2) personal information.
Examples of website traffic data are the tally of visitors to the website, pages viewed, and duration of visit. This data is used to assist us in the ongoing management of the website and/or improving visitor services.
From time-to-time, we collect personal information provided by visitors. Examples of this include, but are not limited to, requests to be added to our mailing lists, registering to participate in the website Discussion Forum, enrolling as a volunteer or supporter, participation in a survey, or possibly through donation. We collect this information only when a visitor provides it – and it may include a visitor’s name, street address, city, state, zip, phone number, and email address. Visitor information may be used for periodic mailings that convey current news about the foundation.
The FDMAS Alliance does not sell, trade, or rent visitor personal information. We will keep confidential all personal information, including benefactor information, except that which the FDMAS Alliance is legally required to disclose. If at anytime a visitor wishes to decline receiving our regular newsletters, the visitor may send either a letter with a written request (including name and contact information) to: email@example.com
By visiting the FDMAS Alliance website, or providing personal information, the visitor consents to the collection and use of information as described in these relevant policies.
If a visitor who has previously provided personal information to the FDMAS Alliance via this website wishes to review, change, modify, update, or delete such data, please submit your changes or requests to: firstname.lastname@example.org
In furtherance of its information-access aims, the FDMAS Alliance website contains select links to other websites. The links are provided only as a compliment of our intent to provide information about the many varied and sundry aspects a patient and/or family must try to cope within the course of the very rare diseases of Fibrous Dysplasia/McCune Albright syndrome. The links may be of interest to the patient community. We caution our visitors who may use the links that we are not, nor can we be, responsible for the material, the policies, or privacy practices at other sites to which we have provided links. Providing a link constitutes neither a validation of the material offered nor an endorsement of that material. The information displayed by the FDMAS Alliance website, or the information displayed by the sites we provide a link for are no substitute for qualified, professional medical advice, consultation, or care. We urge all visitors to discuss any information you may acquire from the FDMAS Alliance website (or from any website we provide a link to) and all questions you may have about your medical condition with a qualified medical professional.
The FDMAS Alliance may allow its website address to be posted as a link from select websites. These inter-links are permitted as long as they are in furtherance of the informational and educational aims of the FDMAS Alliance, and serve to increase patient/family, public, and medical community awareness and understanding of the very rare diseases of Fibrous Dysplasia/McCune Albright syndrome.
We stress the importance to all visitors that they take note of the DISCLAIMER below with regard to any and all: information, services, products, postings, Discussion Forum content, and links provided.
Neither the FDMAS Alliance nor any staff member is qualified or intended to serve as a source of medical advice. The information contained in the FDMAS Alliance website is provided with the understanding that the FDMAS Alliance is not engaged in rendering medical advice or recommendation. The material provided is solely intended for educational and informational purposes, and as a benefit and service in furtherance of the FDMAS Alliance’s mission. This information does not replace necessary consultations with a qualified health care professional.
The information contained in the FDMAS Alliance website is neither presented as, nor is it intended to be, a substitute for medical inquiry, advice, consultation, or treatment. Visitors are cautioned that (1) they should not rely on anything on this website which is provided by the FDMAS Alliance or anything which may be posted on our website or discussion forum by a visitor as a measure or step in the course of treatment for any medical condition, whatsoever. The FDMAS Alliance urges visitors to consult with their medical doctor or other qualified medical professionals promptly if they have, or suspect they have a medical problem.
The FDMAS Alliance and its respective agents and representatives, both individually and collectively, make no representations with respect to the contents hereof, and specifically disclaim any other warranties, including but not limited to implied or express warranties of merchantability or fitness for any particular usage, application or process.
All material contained or referenced on this website, including health- or medical-related materials, is for informational purposes only. Always seek the advice of a qualified health provider with any questions you may have regarding a medical condition.
Changes and Updates
The policies of the FDMAS Alliance are subject to change without prior notice to visitors. Changes are effective immediately and will be posted in the appropriate place on the website.