Media and Embargo Policy

1. PURPOSE AND SCOPE

1.1 This Media and Embargo Policy (the “Policy”) governs media accreditation and the access to, use, recording, reproduction, publication, transmission, and dissemination of scientific, audiovisual, and other materials made available by or on behalf of the International Society for Frontotemporal Dementias (“ISFTD” or the “Society”).

1.2 Media accreditation is granted at the discretion of ISFTD. Accreditation does not create any right or entitlement to attend an ISFTD meeting or to access any session, individual, meeting area, online platform, document, abstract, presentation, recording, press material, or other resource.

1.3 This Policy applies to journalists, reporters, editors, photographers, videographers, and other persons accredited by ISFTD to attend or access an ISFTD activity in a professional editorial or journalistic capacity (each a “Media Representative”).

1.4 Authors, presenters, researchers, exhibitors, sponsors, commercial organizations, public relations representatives, marketing personnel, and other third parties are not considered Media Representatives for the purposes of this Policy unless expressly accredited as such by ISFTD.

1.5 Accreditation and access to embargoed, restricted, or non-public materials are conditional upon compliance with this Policy and with any additional instructions issued by ISFTD in connection with a specific meeting, session, platform, material, or activity.

1.6 All access granted under this Policy is personal, limited, non-exclusive, non-transferable, and revocable. The granting of access does not transfer any ownership, copyright, trademark, or other intellectual property right.

1.7 ISFTD retains sole authority to determine the conditions applicable to media access and reserves the right to restrict, suspend, or withdraw such access where necessary to protect the Society, its scientific activities, meeting participants, contractual obligations, confidential information, intellectual property, security, or the orderly operation of its activities.

2. MEDIA ACCREDITATION

2.1 Eligibility

2.1.1 Applicants must demonstrate that their attendance or access is primarily for independent editorial or journalistic purposes.

2.1.2 ISFTD will require sufficient information to verify the professional status and intended activities of an applicant. Such information can include a valid press card, a letter of assignment from a recognized media organization, recent published or broadcast work, evidence of a current freelance assignment, details of the media organization represented, or other information requested by ISFTD for accreditation purposes.

2.1.3 Submission of an application does not constitute approval and does not create any entitlement to accreditation.

2.1.4 ISFTD determines eligibility on the basis of the applicant’s professional role, proposed activities, previous conduct, prior compliance with ISFTD requirements, available capacity, conflicts with other meeting roles, and relevant operational considerations.

2.1.5 Decisions concerning media accreditation are final.

2.2 Excluded Categories

2.2.1 Media accreditation is not granted to persons attending primarily in any of the following capacities:

 (a) employees or representatives of pharmaceutical, biotechnology, medical device, or other commercial organizations;

(b) public relations, advertising, marketing, or corporate communications personnel;

(c) exhibitors, sponsors, commercial partners, or their representatives;

(d) event management or commercial conference personnel;

(e) consultants acting for commercial entities; or

(f) persons seeking access primarily for promotional, marketing, sales, business development, or other commercial purposes.

2.2.2 Possession of a press card does not in itself establish eligibility.

2.2.3 ISFTD reserves the right to approve an exception where it is satisfied that an applicant performs a genuinely independent editorial function.

2.3 Credentials and Access

2.3.1 Media credentials and access permissions are issued to a named individual and must not be transferred or shared.

2.3.2 Credentials, passwords, press portal access, links, access codes, files, and restricted materials must not be shared, published, forwarded, transferred, reproduced for access purposes, or made available to any unauthorized person.

2.3.3 ISFTD determines which sessions, meeting rooms, exhibition areas, sponsored activities, private meetings, online platforms, press materials, recordings, abstracts, and other resources are accessible to Media Representatives.

2.3.4 ISFTD reserves the right to introduce, amend, or withdraw access restrictions at any time.

2.3.5 Media Representatives must comply promptly with instructions issued by authorized ISFTD personnel, meeting management, venue personnel, or security personnel. Failure to comply constitutes a breach of this Policy.

3. EMBARGO CONDITIONS

3.1 General Embargo Obligation

3.1.1 Information identified by ISFTD as embargoed must not be published, disclosed, transmitted, distributed, posted, broadcast, forwarded, or otherwise made publicly or semi-publicly available before the applicable embargo date and time.

3.1.2 The prohibition in Clause 3.1.1 applies to all forms of communication, including news articles, broadcast media, websites, social media, blogs, newsletters, podcasts, video platforms, email distributions, preprints, and other publication or communication channels.

3.1.3 An embargo applies to information and materials expressly identified as embargoed or supplied under clearly stated embargo conditions.

3.2 Responsibility for Compliance

3.2.1 Each Media Representative is responsible for confirming and complying with the applicable embargo date, time, and time zone.

3.2.2 Embargoed information can be shared internally only with persons directly involved in preparing the relevant editorial coverage and only where those persons have been clearly informed of, and are required to comply with, the applicable embargo.

3.2.3 Embargoed materials must not be shared with external organizations, commercial entities, sponsors, investors, analysts, public relations representatives, marketing representatives, or any other unauthorized person.

3.2.4 Where there is any uncertainty regarding the scope or timing of an embargo, publication or disclosure must be withheld until clarification has been obtained from ISFTD.

3.2.5 Failure to verify an embargo does not excuse premature publication or disclosure.

3.3 Embargo Timing

3.3.1 The applicable embargo date, time, and time zone will be stated in the relevant embargo notice, press material, abstract information, meeting platform, or other ISFTD communication.

3.3.2 A specific embargo notice attached to or issued in relation to particular material takes precedence over any general embargo timetable.

3.3.3 ISFTD reserves the right to amend an embargo where operational, scientific, legal, security, or other circumstances require such amendment.

3.3.4 ISFTD will communicate material changes to an active embargo to affected Media Representatives as soon as reasonably practicable.

3.4 Exceptions

3.4.1 An ISFTD embargo does not apply where the Media Representative can demonstrate that the relevant information:

(a) was already publicly available before being supplied by ISFTD;

(b) was independently and lawfully obtained from another source without use of ISFTD embargoed materials;

(c) was expressly authorized for release by ISFTD; or

(d) must be disclosed under applicable law.

3.4.2 The Media Representative bears responsibility for demonstrating that an exception under Clause 3.4.1 applies.

3.4.3 In the absence of clear evidence that an exception applies, the applicable ISFTD embargo remains in effect.

3.5 Interviews and Other Sources

3.5.1 Media Representatives can conduct legitimate journalistic interviews.

3.5.2 Media Representatives must not:

(a) encourage or request the unauthorized disclosure of restricted ISFTD materials;

(b) encourage another person to circumvent ISFTD access controls;

(c) request that a presenter or other participant provide restricted materials contrary to applicable ISFTD requirements;

(d) use media accreditation to gain access to confidential, private, or restricted meetings or materials; or

(e) represent themselves as authorized to receive information to which access has not been granted.

3.5.3 Interviewees remain responsible for complying with any confidentiality, disclosure, intellectual property, or embargo obligations applicable to them.

3.6 Actual or Suspected Embargo Breach

3.6.1 A Media Representative who becomes aware of an actual or potential premature disclosure of embargoed ISFTD information must notify ISFTD immediately.

3.6.2 Where a breach has occurred, the Media Representative must cooperate with ISFTD and must take reasonable corrective action requested by ISFTD.

3.6.3 Corrective action can include correction or amendment of published information, removal of prematurely disclosed material, withdrawal or correction of social media content, publication of an embargo clarification, or other reasonable measures intended to limit further dissemination.

3.6.4 Failure to cooperate following an actual or suspected breach will constitute an aggravating factor when ISFTD determines appropriate sanctions or future accreditation eligibility.

4. INTELLECTUAL PROPERTY, RECORDING, AND USE OF MATERIALS

4.1 Intellectual Property

4.1.1 Materials made available through ISFTD meetings, websites, platforms, press resources, and communications are subject to applicable copyright, trademark, confidentiality, and other proprietary rights.

4.1.2 Such rights can belong to ISFTD, authors, presenters, researchers, institutions, sponsors, or other applicable rights holders.

4.1.3 Media accreditation does not grant a general right to copy, reproduce, distribute, modify, adapt, publish, commercially exploit, or create derivative materials from protected content.

4.1.4 Access to materials is granted solely for legitimate journalistic reporting and remains subject to this Policy and to any specific conditions attached to the relevant material.

4.2 Recording and Photography

4.2.1 Unless expressly authorized by ISFTD, Media Representatives must not:

(a) make audio recordings of scientific sessions;

(b) make video recordings of scientific sessions;

(c) livestream any session or meeting activity;

(d) photograph presentation slides;

(e) photograph posters where photography is restricted;

(f) capture or distribute screenshots from restricted online platforms;

(g) record private discussions or restricted meetings;

(h) rebroadcast session content; or

(i) reproduce substantial portions of presentations or other protected materials.

4.2.2 Silence, acquiescence, or absence of an objection from a presenter does not constitute ISFTD authorization.

4.2.3 Where prior authorization is required, authorization must be obtained before any recording, photography, filming, or capture begins.

4.2.4 ISFTD reserves the right to impose additional restrictions in relation to specific sessions, presenters, materials, platforms, or meeting areas.

4.2.5 Failure to comply with recording or photography restrictions can result in immediate withdrawal of media credentials.

4.3 Authorized Media Materials

4.3.1 ISFTD determines which photographs, graphics, recordings, quotations, press releases, and other resources are authorized for media use.

4.3.2 Authorized materials must be used only within the scope and subject to the conditions under which they are provided.

4.3.3 Where attribution is required, the following wording must be used:

“Courtesy of the International Society for Frontotemporal Dementias (ISFTD).”

4.3.4 ISFTD reserves the right to withdraw authorization where the applicable conditions of use have not been respected.

4.4 ISFTD Name, Logo, and Branding

4.4.1 Media Representatives can refer factually to ISFTD and its meetings in legitimate editorial reporting.

4.4.2 ISFTD logos, branded graphics, templates, visual identity, and other proprietary materials must not be used for advertising, commercial promotion, product endorsement, merchandising, corporate marketing, unrelated fundraising, or any activity that suggests an official relationship with ISFTD unless expressly authorized by ISFTD.

4.4.3 No person can state or imply that ISFTD endorses, sponsors, approves, or supports any publication, organization, product, service, company, or position unless ISFTD has expressly confirmed such relationship.

5. EXHIBITION AREAS, SPONSORED ACTIVITIES, AND RESTRICTED SPACES

5.1 Media accreditation does not provide unrestricted access to exhibition areas, industry spaces, sponsored sessions, demonstration areas, private meetings, or other controlled areas.

5.2 ISFTD determines access conditions applicable to such areas.

5.3 Photography, filming, recording, interviewing, or other media activity within restricted areas requires prior authorization where specified by ISFTD.

5.4 Media Representatives must comply with legitimate restrictions communicated by ISFTD, exhibitors, sponsors, presenters, institutions, venues, or other applicable rights holders.

5.5 Media accreditation must not be used for commercial solicitation, sales activities, marketing, advertising, lead generation, business development, promotional filming, or other non-editorial commercial activities.

5.6 ISFTD reserves the right to restrict access or require a Media Representative to leave an area where necessary to protect confidentiality, privacy, security, contractual obligations, regulatory requirements, participant experience, or proper meeting operations.

5.7 An instruction to leave a restricted area must be followed immediately.

6. CONDUCT AND INTERACTION WITH PARTICIPANTS

6.1 Media Representatives must conduct their activities professionally and must not disrupt scientific sessions, meetings, participant activities, or other ISFTD operations.

6.2 Media Representatives must comply with applicable privacy requirements, session rules, security requirements, venue rules, and reasonable instructions issued by ISFTD.

6.3 A request by a participant not to be photographed, recorded, or interviewed must be respected.

6.4 Media Representatives must not harass, repeatedly pursue, obstruct, intimidate, or interfere with any participant who declines an interview or other media interaction.

6.5 ISFTD reserves the right to withdraw accreditation immediately where media activity disrupts a session, meeting operation, participant activity, or the legitimate activities of another attendee.

7. PRIVACY AND PERSONAL DATA

7.1 ISFTD processes information supplied by Media Representatives for the purposes of assessing accreditation, verifying professional status, administering meeting and online access, maintaining security, communicating embargo and operational information, maintaining accreditation records, investigating suspected breaches of this Policy, and assessing eligibility for future accreditation.

7.2 Personal data is handled in accordance with the ISFTD Privacy Policy and applicable data protection requirements.

7.3 ISFTD retains records relating to accreditation decisions and policy breaches for as long as reasonably necessary for administrative, security, legal, compliance, or future accreditation purposes.

8. NON-COMPLIANCE AND SANCTIONS

8.1 Compliance with this Policy is a condition of accreditation and continued access to ISFTD media resources.

8.2 ISFTD reserves the right to investigate any actual or suspected breach of this Policy and to require information reasonably necessary to establish the relevant circumstances.

8.3 ISFTD reserves the right to suspend credentials, press portal access, embargoed access, or other media privileges immediately while an actual or suspected breach is under review.

8.4 Where ISFTD determines that a breach has occurred, it can take one or more of the following measures:

(a) issue a formal warning;

(b) require corrective action;

(c) restrict access to particular materials, sessions, platforms, or areas;

(d) suspend or terminate media credentials;

(e) revoke access to embargoed materials;

(f) revoke online or press portal access;

(g) remove the Media Representative from ISFTD press or media distribution lists;

(h) require the Media Representative to leave a restricted area or the meeting;

(i) decline accreditation for future ISFTD meetings;

(j) impose a defined period of ineligibility for future accreditation;

(k) notify the relevant editor, employer, commissioning organization, or media outlet;

(l) notify an affected presenter, author, institution, sponsor, or rights holder; and

(m) take other reasonable operational measures necessary to protect ISFTD, its participants, its scientific activities, or applicable rights.

8.5 In determining the appropriate response, ISFTD will take into account the seriousness and impact of the breach, whether it was intentional, reckless, or inadvertent, whether confidential or embargoed information was publicly disseminated, the extent of dissemination, whether ISFTD was notified promptly, whether corrective action was taken, the level of cooperation demonstrated, any previous breaches or warnings, and any resulting risk or harm.

8.6 Serious, deliberate, repeated, or uncorrected breaches can result in immediate withdrawal of accreditation without prior warning.

8.7 Withdrawal, suspension, or refusal of accreditation does not create any entitlement to compensation or reimbursement of registration fees, travel, accommodation, transportation, or other expenses incurred in connection with attendance.

8.8 Nothing in this Policy limits any right or remedy available to ISFTD or another applicable rights holder under applicable law.

9. ADMINISTRATION AND INTERPRETATION

9.1 This Policy is administered by ISFTD through its Executive Office and designated meeting, communications, and media personnel.

9.2 ISFTD retains final authority to interpret and apply this Policy in relation to its meetings, platforms, materials, and activities.

9.3 Authorized ISFTD representatives determine operational matters concerning accreditation, access, embargoes, restricted areas, recording and photography, media conduct, and sanctions.

9.4 Such operational decisions do not require separate formal approval.

9.5 ISFTD can issue additional requirements or instructions in relation to particular meetings, sessions, platforms, materials, or circumstances.

9.6 Specific instructions relating to a particular embargo, material, session, platform, or restricted area take precedence over the general provisions of this Policy to the extent that they impose a more specific requirement.

9.7 Media Representatives must comply with such instructions as a condition of continued accreditation and access.

10. AMENDMENTS

10.1 ISFTD reserves the right to amend this Policy to reflect changes in meeting operations, technology, scientific communication practices, security requirements, regulatory requirements, or other operational needs.

10.2 Material amendments affecting an active embargo or existing restricted access will be communicated to affected Media Representatives as soon as reasonably practicable.

10.3 ISFTD reserves the right to require acknowledgement of an amended version of this Policy as a condition of continued access to restricted or embargoed materials.

11. CONTACT

11.1 Questions concerning media accreditation, embargo requirements, meeting access, recording, photography, or the interpretation of this Policy must be directed to:

International Society for Frontotemporal Dementias (ISFTD)