LA Kelley Communications, Inc. respects and maintains the privacy of the patients and families of patients with bleeding disorders who subscribe to or order its free publications and services and agree to be on its mailing list. “Patient” or “patients” refer to adults with bleeding disorders, and parents or caretakers of children age 17 and younger who have bleeding disorders.

Patients are automatically placed in the LA Kelley Communications database when they order its free e-newsletter, books, or services. They can register through the company website, through patient mailings and advertisements, at patient meetings, by word of mouth, or by making unsolicited requests to LA Kelley Communications through the mail, email, or by phone.

LA Kelley Communications only accepts patient registration directly from the patients themselves. If hospitals, nonprofits, or for-profit companies attempt to register a patient with LA Kelley Communications, LA Kelley Communications will return the request to the sender, and invite the sender to ask the patient to register directly with LA Kelley Communications.

Collection of Personal Information

LA Kelley Communications collects Personal Information (hereafter referred to as PI), or information that is personally identifiable about patients with bleeding disorders, including but not limited to name, address, email address, phone number, ages, and other non-public information such as diagnoses, birthdates, children’s names, and other demographic variables.

The PI gathered helps LA Kelley Communications to learn about visitors to the company website, its customers and potential customers, and patients and families with bleeding disorders. LA Kelley Communications uses this information to tailor the features, performance, and support of our products and services to them; and to offer patients additional third-party support, information, and opportunities, when possible and if they approve.

All patients who register with LA Kelley Communications are directed to the website and requested to read the Privacy Policy.

The states of Washington, Connecticut and Nevada have strict laws about informed consent and privacy concerning patients. LA Kelley Communications has chosen to exclude patients from these three states, unless the patients have provided written permission of inclusion.

Disclosure of Personal Information

Except as otherwise stated in this Privacy Policy, LA Kelley Communications does not trade, rent, or share PI with third parties, without the express permission of patients. LA Kelley Communications will not disclose any PI unless our registered patients permit us to do so.

LA Kelley Communications does mail notices of products and services from third parties, typically pharmaceutical companies, who hire it to share these with patients (see “Direct-to-Consumer Mail” below). The third party promoting these mailings never sees patients’ PI. These third parties enter into a contractual agreement with LA Kelley Communications, and they know they are not allowed to contact patients on the LA Kelley Communications mailing list through the company, nor view registered patients’ contact information or PI.

LA Kelley Communications may use trusted third-party services, such as Campaign Monitor, to manage email communications. These services are compliant with data privacy standards and only use PI for our communications.

Database

All patient PI is stored in Excel, as an electronic database. The LA Kelley Communications patient database has been constructed over 25 years and is not available for sale. The database is updated frequently, sometimes daily, most often monthly, and patients are actively contacted if discrepancies appear, so that PI is accurate. This helps prevent unwanted mailings, notices, and educational materials being sent to patients.

Regarding Children

LA Kelley Communications does not intentionally register children under age 18 separately from their parents, caretakers, or legal guardians. It does gather demographic information on children with bleeding disorders only with parental consent.

Privacy Policy in Practice

Direct-to-Consumer Mail

At least six times per year, LA Kelley Communications distributes direct-to-consumer (DTC) mailings to its proprietary mailing list of patients and families. These mailings may contain information about new programs, new products, and opportunities from pharmaceutical companies, specialty pharmacies, or nonprofits. A letter from Laureen Kelley, president of LA Kelley Communications, is sent with each mailing, detailing why direct mailings are sent, the tentative schedule for mailing, and how to opt out. Recipients are always reminded in this personal letter from the president be cautious when contacting any company, such as the DTC mail sponsor, and when releasing their personal medical or contact information. Recipients are also invited to opt out of DTC mailings by calling or emailing LA Kelley Communications if they no longer want to receive the direct mailings.

LA Kelley Communications receives a fee from the DTC mail sponsor for its direct mailing. For further protection of patients’ privacy, companies that contract for a direct mailing may not use their company envelopes, and may not use their own fulfillment company. All direct mailings are sent in LA Kelley Communications envelopes through its own contracted fulfillment house. Occasionally, direct emails are sent to patients and families. These are blinded so that recipients cannot see each other’s email addresses.

When a patient or family member registers with LA Kelley Communications to receive its free e-newsletter or books, or to learn more about the company, they expressly consent to the collection of their PI by LA Kelley Communications, and consent to receive direct mailings on behalf of third parties.

Electronic Update

Up to ten times per year, LA Kelley Communications emails The Communiqué, an HTML file sent via Constant Contact to alert patients, families, hospitals, and corporations about its new products, services, travels, and events. Recipients can opt out by clicking the “unsubscribe” button at the bottom of The Communiqué.

Consent Forms

If patients are interviewed for articles published on HemaBlog®, a book, or any other publication, they are required to complete and sign an interview consent form. In most cases, patients are shown their quotations or stories before publication. If a patient’s photo is considered for publication, a signed photo release consent form is also required.

Solicitation for Surveys or Focus Groups.

LA Kelley Communications has conducted market research and focus groups for the bleeding disorder community since 1998, and is a trusted name in the patient community. Pharmaceutical companies hire the company to locate qualified participants to offer insights into living with a bleeding disorder.

LA Kelley Communications now partners exclusively with MedPanel, Inc., a Massachusetts-based agency with full-service market research capabilities. MedPanel specializes in rare disease market research and patient recruitment, particularly with difficult-to-find patients spanning the rare disease population. MedPanel conducts custom primary qualitative and quantitative market research including patient journey research, branding/naming, concept testing, market assessments, advisory board meetings, and market segmentation exercises.

LA Kelley Communications may solicit patients and families for marketing research in partnership with MedPanel. These solicitations may require patients to divulge PI to MedPanel. If a patient decides to participate in a third-party survey or focus group with MedPanel, LA Kelley Communications requests that patients register separately with MedPanel for future projects. MedPanel will then be free to reach out to patients and families without involvement by LA Kelley Communications. Thus, MedPanel is permitted to build its own database through LA Kelley Communications, once permission has been established with patients from LA Kelley Communications’ proprietary database.

LA Kelly Communications IS NOT RESPONSIBLE FOR A BREACH BY A THIRD PARTY OF ITS CONTRACT WITH LA KELLEY COMMUNICATIONS REGARDING ITS OBLIGATION TO PROTECT THE CONFIDENTIAL PERSONALLY IDENTIFIABLE INFORMATION OF THOSE PATIENTS AND/OR PATIENT FAMILIES WHO ELECT TO PARTICIPATE IN A THIRD-PARTY SURVEY OR FOCUS GROUP.

User Consent

By submitting PI through the LA Kelley Communications website, patients agree to the terms of this Privacy Policy and expressly consent to the processing of their PI according to the terms of this Privacy Policy. A link to this policy is shared with each patient who signs up with LA Kelley Communications. A patient’s consent may be withdrawn in writing at any time.

Choices Regarding Personal Information

LA Kelley Communications offers patients and their families choices regarding the collection, use, and sharing of PI. When patients receive its e-newsletter or promotional communications, they may choose to stop receiving communications, and can opt out by following the unsubscribe instructions provided in the email received or by contacting LA Kelley Communications directly (see “Contact Us” below). Despite patients’ indicated email preferences, LA Kelley Communications may send notices from time to time regarding the services we provide and any updates to our Terms of Use or Privacy Policy. Patients and family members may change any of their PI in the database by sending an email at the addresses below. A patient’s and/or family’s consent to be excluded may be sent in writing at any time.

If patients receive non-electronic information from LA Kelley Communications, such as DTC, they may write, call, or email LA Kelley Communications to have their name removed if they no longer want to receive these publications.

Within five (5) business days of receiving their preference, LA Kelley Communications will remove their name from the list they indicate, such as the DTC list or The Communiqué list.

Patients can request access to their personal data, provide updates to it, or unsubscribe at any time.

LA Kelley Communications’ website uses cookies to analyze site traffic and improve user experience. Patients can choose to disable cookies through their browser settings.

Other Sites

LA Kelley Communications’ provision of a link to any other website or location is for patients’ convenience and does not signify our endorsement of such other website or location or its contents. LA Kelley Communications has no control over, does not review, and cannot be responsible for these outside websites or their content. Please be aware that the terms of LA Kelley Communications’ Privacy Policy do not apply to these outside websites.

Security

LA Kelley Communications is committed to protecting the security of patients’ PI. It does not store PI on its company website. LA Kelley Communications protects patients’ PI from unauthorized physical access by storing PI in a controlled facility. Except as provided elsewhere in this Privacy Policy, LA Kelley Communications limits access to PI in the electronic databases to those few persons and entities (including subcontractors) in LA Kelley Communications’ organization who have a business need for such access. LA Kelley Communications conducts regular internal audits to ensure compliance with these security measures, and generates security incident logs that track information useful in screening for attempted abuse of or unauthorized access to patients’ PI.

Under no circumstance is information about patients shared directly with third parties without the patients’ express permission. This policy has been in effect since 1990, when the company was founded.

LA Kelley Communications updates its database at least monthly on its premises, and uses a professional, bonded fulfillment company to print addresses directly on the newsletters and envelopes to be mailed. No other party is allowed to see the mailing list. The mailing list is sent encrypted to the fulfillment house. After completing each mailing, the fulfillment house informs LA Kelley Communications that the mailing list received from it has been destroyed.

Although LA Kelley Communications has taken significant steps to ensure that PI is not intercepted, accessed, used, or disclosed by unauthorized persons, LA Kelley Communications cannot fully eliminate security risks associated with PI.

Security Breaches

If for any reason a patient’s PI is compromised (for example, if shared accidentally via email, or if there is unauthorized access, use, or disclosure), the patient will be notified immediately, and the incident will be recorded as a security breach. The accidental recipient of the patient’s PI will be notified and asked to destroy it.

Nondisclosure

All hired subcontractors and vendors of LA Kelley Communications who perform mailings must sign a nondisclosure agreement that prohibits the sharing of any PI about patients and families registered with LA Kelley Communications.

Contact Us

Patients with questions or concerns regarding this Privacy Policy should contact LA Kelley Communications, Inc., 21 Sawmill Way, Georgetown, MA 01833 USA, 978-821-6197 or info@kelleycom.com.

Privacy Policy Updates

This Privacy Statement is a living document and is subject to occasional amendment. This Policy was last updated July 2025.