Terms of Service

§1. General provisions

1. These Terms of Service (the “Terms”) set forth the rules for use of the website eosinophilic-fasciitis.org (the “Site”), operated by Damian “Kuljo” Kuliś (the “Operator”), a natural person resident in Poland, with the following contact details:

   • postal address: ul. Jarosława Dąbrowskiego 18/6, 02-561 Warszawa, Poland
   • email: [email protected]
   • telephone: +48 600 130 255
   • email for data-protection matters (requests under Articles 15–22 GDPR, takedown notices, breach reports): [email protected]

2. The Site is a non-commercial, informational initiative operated as an informal individual undertaking. The Operator does not act in the capacity of an entrepreneur within the meaning of Article 43¹ of the Polish Civil Code and does not perform economic activity in connection with the Site.

3. By accessing or using the Site the user (the “User”) accepts these Terms.

4. These Terms are issued pursuant to Article 8(1)(1) of the Polish Act of 18 July 2002 on the provision of services by electronic means (Dz.U. 2002 No 144 item 1204, as amended, “UŚUDE”).

5. The Site constitutes an information-society service within the meaning of Article 1(1)(b) of Directive (EU) 2015/1535 and Article 2(4) UŚUDE.

§2. Site character and scope of services

1. The Site is a static, publicly accessible information resource concerning eosinophilic fasciitis (ICD-10 M35.4, also known as Shulman syndrome).

2. The Operator provides the following services by electronic means:

   a) access to informational content on the disease, its symptoms, diagnostics, treatment, and patient experiences, including localized articles available under the Site’s medical sections;

   b) reception of correspondence from Users through the contact form on the relevant locale subpages, on the rules set out in §5 and §6;

   c) (planned, currently inactive) a periodic newsletter regarding developments in the field of M35.4, dispatched to Users who have voluntarily subscribed and confirmed their email address through a double opt-in mechanism;

   d) (planned, currently inactive) a library of long-form articles licensed under Creative Commons Attribution-ShareAlike 4.0 International, available under the future /knowledge/ section.

3. The services referred to in paragraph 2 are provided without charge. The Site does not display commercial advertising, does not contain affiliate links, does not participate in any sponsorship or paid placement arrangement, and does not solicit or accept donations on its own behalf.

4. The Site does not constitute a medical device within the meaning of Article 2(1) of Regulation (EU) 2017/745. The Operator does not provide healthcare services within the meaning of the Polish Act of 5 December 1996 on the professions of physician and dentist. The editorial framing of medical content is set out in §7.

§3. Technical requirements

1. Use of the Site requires:

   a) a device with internet access;

   b) a modern web browser supporting HTML5 and CSS3;

   c) JavaScript enabled — optional for browsing static content; required for submission of the contact form when its backend is operational;

   d) approximately 1 MB of data transfer per page view, varying with content.

2. The Site is available continuously, 24 hours per day, subject to:

   a) maintenance interruptions, announced in advance whenever practicable;

   b) force-majeure events;

   c) interruptions in the operation of the Operator’s processors (Cloudflare Pages as hosting provider, the planned mail provider, the planned hCaptcha anti-spam provider) — beyond the Operator’s direct control;

   d) brief unavailability resulting from publication of new versions of the Site.

3. The Operator does not guarantee availability of the Site at any particular moment and does not bear liability for damages arising from unavailability, save for liability arising from intentional fault or gross negligence, which may not be excluded under Article 473 §2 of the Polish Civil Code.

§4. Conclusion and termination of contracts

1. A contract for the provision of access to informational content is concluded when the User initiates access to the Site and is terminated when the User ceases such access. No registration, account, or persistent identification of the User is necessary or performed.

2. A contract for the provision of the contact-form service is a one-off contract for receipt and reply to a single inquiry. It is concluded when the User submits the contact form (subject to the eligibility requirements of §5) and is performed by the Operator’s reply or by deletion of the inquiry in accordance with §5(4). The User may withdraw from the contract at any time prior to dispatch of the reply by sending notice to the address indicated in §1(1).

3. A contract for the provision of the newsletter service (when the newsletter is activated) is a continuous contract for receipt of messages until terminated by the User. It is concluded only after the double opt-in confirmation provided by the User and may be terminated by the User at any time without giving reasons, by use of the unsubscribe link contained in every message dispatched, or by notice sent to the Operator at the address indicated in §1(1). Termination is effective upon receipt by the Operator.

4. Performance of services described in paragraphs 2 and 3 is suspended in respect of Users below the age of 16 in accordance with §5(6).

§5. Rules for using the contact form

1. The contact form on the Site is intended exclusively to enable an initial contact between the User and the Operator. Its purpose is to permit introduction of the User and indication of the reason for contact.

2. In the first message sent through the contact form the User shall not transmit:

   a) any attachments (in particular: PDF, image, document, archive, or other binary files);

   b) any medical documentation in any form (in particular: referrals, discharge summaries, laboratory test results, imaging, histopathology reports, consultation notes);

   c) any detailed health information beyond what is strictly necessary to identify the reason for contact (typically a single sentence such as “I am a patient with M35.4 and wish to share my story”); in particular, the User shall not transmit lists of medications and dosages, detailed medical histories, dates of clinical events, or data identifying treating physicians;

   d) any special-category data within the meaning of Article 9(1) of Regulation (EU) 2016/679 (the “GDPR” or “RODO”) exceeding the scope referred to in subparagraph (c).

3. The Operator processes data contained in the first message exclusively for the purpose of replying to the User and on the basis of the User’s express consent (GDPR Art. 6(1)(a) in combination with Art. 9(2)(a) in respect of self-disclosed health data within the limits of paragraph 2(c)), in accordance with the principle of data minimization (GDPR Art. 5(1)(c)).

4. If a message received through the contact form exceeds the scope set out in paragraph 2 — in particular if it contains attachments or detailed medical documentation — the Operator:

   a) does not familiarize itself with the full content of the message or with the content of any attachments beyond identification of the sender, the return address, and the general reason for contact;

   b) deletes the message together with attachments permanently from the inbox and, where technically necessary, from trash folders and backup copies, within 30 days of receipt;

   c) sends to the sender a brief formalized reply informing of the deletion, its reason (breach of paragraph 2), and the proper mode of initial contact.

   The legal basis for the conduct described in this paragraph is constituted by GDPR Art. 5(1)(c) (principle of data minimization), GDPR Art. 9(1) (absence of legal basis under Art. 9(2) for unsolicited special-category data), and GDPR Art. 17(1)(d) (obligation to erase data processed unlawfully).

5. The User has the right to:

   a) withdraw the consent referred to in paragraph 3 at any time by notice to the Operator (such withdrawal does not affect the lawfulness of processing prior to withdrawal, in accordance with GDPR Art. 7(3));

   b) request erasure of correspondence in accordance with GDPR Art. 17;

   c) exercise all other rights of the data subject set out in the Privacy Policy.

6. Age requirement. The contact form, including the conclusion of the contract referred to in §4(2), is available only to Users who have attained the age of 16, in accordance with GDPR Art. 8(1) and Article 4 of the Polish Act of 10 May 2018 on the protection of personal data (Dz.U. 2018 item 1000). Users below the age of 16 may use the contact form only through a parent or legal guardian acting on the child’s behalf and providing consent in accordance with GDPR Art. 8(1) second sentence.

§6. Cooperation regarding publication of patient stories or clinician contributions

1. After exchange of initial correspondence pursuant to §5 and confirmation of mutual willingness to proceed, the Operator and the User may engage in a cooperation procedure for the purpose of publishing on the Site:

   a) a patient story or related material — where the User acts in the capacity of a person diagnosed with M35.4 or of another individual sharing their own patient experience; or

   b) a clinician contribution — an expert commentary, didactic treatment, case discussion, literature review, or other substantive material — where the User acts in the capacity of a physician, other healthcare professional, or researcher sharing professional knowledge and experience.

   The procedure consists of five stages set out below and applies regardless of the category of material referred to in (a) or (b); references to “the User” in the remainder of this §6 cover both categories unless the context indicates otherwise.

2. Stage 1 — Initial contact. The User sends an introductory message through the contact form, in the scope set out in §5(2).

3. Stage 2 — Individual arrangements. The Operator replies by email, indicates the possible scope of cooperation, asks questions regarding what materials the User wishes to share, for what purpose, in what form, with what restrictions on publication, and with what maximum further redistribution. The parties jointly establish and record in correspondence the scope of materials to be transmitted. The User’s express consent for the processing of special-category data (GDPR Art. 9(2)(a)) is obtained at this stage in relation to the specifically agreed scope — to the extent that the materials include data concerning the User’s health or special-category data concerning third parties; in respect of materials not containing special-category data, the legal basis for processing remains GDPR Art. 6(1)(a) and (b).

4. Stage 3 — Transmission of materials. The User transmits to the Operator exclusively those materials whose scope has been specified and confirmed in correspondence at Stage 2.

5. Stage 4 — Preparation and preview. The Operator prepares the material (an article, a story entry, an update to a chart or graphic) and, prior to publication, transmits a preview to the User for acceptance.

6. Stage 5 — Acceptance, revision, or withdrawal. The User shall:

   a) accept the material, upon which it shall be published;

   b) submit comments, upon which the Operator shall amend the material and repeat Stage 4; or

   c) withdraw from cooperation, without obligation to state reasons.

7. The User may withdraw consent or terminate cooperation at any stage. In such case:

   a) the Operator shall permanently delete all materials received from the User and all draft versions of content prepared on their basis, within 30 days of receipt of the notice of withdrawal;

   b) the Operator shall not publish any content referring to the User, their health history or professional contribution, their correspondence, or other transmitted materials;

   c) the Operator shall maintain confidentiality with regard to the fact of having engaged in discussions and with regard to the content of correspondence received in the course of cooperation, to the extent exceeding information publicly available;

   d) the Operator may retain a minimal record of correspondence confirming compliance with obligations arising from the GDPR (confirmation of erasure, registry of data-subject-right realization) for the period necessary to demonstrate compliance with law (GDPR Art. 5(2), principle of accountability), not exceeding 3 years;

   e) withdrawal of consent shall not affect the lawfulness of processing performed prior to withdrawal, in accordance with GDPR Art. 7(3).

§7. Medical disclaimer and limitation of liability

1. The content of the Site is informational and educational in character. It does not constitute medical advice, diagnosis, prognosis, or treatment recommendation. It does not substitute for consultation with a qualified physician or other healthcare professional.

2. The Operator is a patient diagnosed with M35.4 and is not a clinician. The Operator does not act in the capacity of a medical authority. Treatment decisions in respect of any User or any other person shall belong exclusively to that person’s treating physician.

3. The Operator endeavors to ensure that medical content on the Site is accurate, current, and well-sourced, but does not guarantee its completeness, accuracy in respect of any individual clinical situation, or freedom from error or omission.

4. The Operator’s liability for damages arising in connection with use of the Site is excluded to the maximum extent permitted by mandatory provisions of applicable law. The exclusion does not apply to damages caused intentionally or by gross negligence, in accordance with Article 473 §2 of the Polish Civil Code, nor to liability that may not be excluded toward a consumer under mandatory consumer-protection provisions of the law applicable to that consumer pursuant to Regulation (EC) No 593/2008 (Rome I).

5. The full medical disclaimer, including the User’s recommended escalation path for medical questions, is published at the address /<lang>/medical-disclaimer (for the English version: /en/medical-disclaimer). The Operator recommends the User review that document before relying on any content from the Site.

§8. Copyright and licensing

1. All textual content of the Site authored by the Operator — including the articles under the medical sections, the content of the remaining informational and community pages, the text of the legal documents, the localised interface content in every language version of the Site, as well as the long-form articles under the planned /knowledge/ section — is published under the Creative Commons Attribution-ShareAlike 4.0 International license (CC BY-SA 4.0), the text of which is available at https://creativecommons.org/licenses/by-sa/4.0/legalcode. The licensing boundary runs between the textual layer and the technical layer of the Site: every text intended to be read is covered by the license referred to in the preceding sentence, whereas the source code, templates, components, and styles are governed by paragraph 4.

2. The license referred to in paragraph 1 entitles any User to copy, distribute, modify, translate, and create derivative works, including for commercial purposes, on condition of:

   a) appropriate attribution of the Operator as the author, indication of the canonical source of the work (the URL of the original publication on the Site), and indication of the license (CC BY-SA 4.0);

   b) provision of any derivative work under the same license (CC BY-SA 4.0) or a license compatible with it within the meaning of the said license terms;

   c) non-imposition of additional legal or technological restrictions exceeding those provided in the license.

3. The “Kuljo” handle and any wordmark or logotype associated with the Operator and the Site are not covered by the license referred to in paragraph 1 and constitute reserved indicators of identity of the Operator. A User reusing content under CC BY-SA 4.0 may attribute the Operator by name but shall not use the said indicators in a manner suggesting endorsement of the derivative work by the Operator or the Site.

4. The Site’s source code, build configuration, components, layout templates, and styling are the exclusive property of the Operator. All rights are reserved. No license to the source code is granted by these Terms.

5. The Operator respects the copyright of third parties. Quotation of third-party works is conducted within the limits provided by Article 29 of the Polish Act of 4 February 1994 on copyright and related rights (Dz.U. 1994 No 24 item 83, as amended). Images and graphical materials are either original works of the Operator or used pursuant to specifically obtained licenses.

6. Notice and takedown. Allegations of infringement of intellectual-property rights by content published on the Site shall be submitted by email to [email protected]. The submission shall identify:

   a) the submitter and contact details;

   b) the specific URL and content alleged to infringe;

   c) the legal basis of the claim and identification of the right alleged to be infringed.

   The Operator shall examine the submission and respond within 14 days of receipt by either removing or modifying the content concerned, or by providing a reasoned response. A party affected by removal may submit a counter-notice within 14 days, indicating the legal basis for restoring the content; the Operator shall examine the counter-notice within a further 14 days. The procedure referred to in this paragraph implements Article 14 UŚUDE and the corresponding provisions of Directive 2000/31/EC.

§9. Complaints, ADR, ODR, governing law, and jurisdiction

1. The User may submit complaints regarding services provided by electronic means by email to [email protected], within 30 days of the occurrence of the event giving rise to the complaint. The complaint shall identify the User, the event complained of, and the requested outcome.

2. The Operator shall examine the complaint within 30 days of receipt and shall inform the User of the outcome by email. In the case of a particularly complex complaint, the Operator may extend the time for examination by up to 30 additional days, informing the User of the extension and its reason within the initial 30-day period.

3. Requests for the exercise of rights of the data subject under GDPR Art. 15–22 are handled in accordance with the Privacy Policy and within the time limits provided by GDPR Art. 12(3), namely within one month of receipt, with the possibility of a two-month extension for complex requests.

4. The User has the right to use out-of-court dispute-resolution mechanisms. The European Commission’s Online Dispute Resolution platform is available at https://ec.europa.eu/consumers/odr. The Operator shall not be obliged to participate in dispute-resolution procedures before alternative dispute-resolution bodies but reserves the right to do so if the Operator and the User so agree.

5. These Terms shall be governed by Polish law. Disputes arising under these Terms shall be subject to the jurisdiction of courts having jurisdiction over the Operator’s place of residence. The preceding sentence does not apply to disputes with Users having the status of consumers within the meaning of Article 22¹ of the Polish Civil Code, to the extent that mandatory provisions of the law applicable in accordance with Regulation (EU) No 1215/2012 (Brussels I bis) and Regulation (EC) No 593/2008 (Rome I) provide such a consumer with more protective jurisdictional or substantive rules.

§10. Final provisions

1. The User shall not provide through services offered on the Site content of an unlawful nature, in accordance with Article 8(3)(2)(b) UŚUDE. This includes, in particular, content infringing the rights of third parties, content of a hate-speech or defamatory character, content constituting unsolicited commercial information, and content directed against the security of the Site or of the Operator’s infrastructure.

2. Geographical addressing. The Site is addressed to residents of the European Union and the European Economic Area. The Site is designed in accordance with Polish law and the law of the European Union. The Operator does not design, verify, or adjust the Site to the legal requirements of jurisdictions outside the EU/EEA (in particular: the United States, the United Kingdom, and non-European countries). Use of the Site by persons from outside such territories occurs at their own responsibility with respect to compliance with their local data-protection, consumer-protection, and other applicable laws.

3. No donations. The Operator does not accept and does not process monetary donations on behalf of the Site or on behalf of the Operator in connection with operation of the Site. Funds for research on M35.4 should be directed directly to the organizations referenced on the “Support” subpage of the Site; the Operator does not act as intermediary in such fundraising.

4. External links and the “Support” section.

   a) Links to third-party websites published on the Site are provided for informational purposes only. The Operator bears no responsibility for the content, availability, accuracy, or currency of websites to which links lead, nor for changes made to such websites after the link is published on the Site. The decision to follow a link and to rely on the content of the linked site is made by the User at the User’s own responsibility.

   b) Organizations referenced in the “Support” section of the Site constitute a subjective suggestion by the Operator of places where the User may consider supporting activities on behalf of persons affected by rare diseases. The reference to an organization in the “Support” section does not constitute a recommendation within the meaning of the law applicable to advisory services, nor any statement by the Operator as to the quality, transparency, effectiveness, or trustworthiness of any of the referenced organizations. The list is non-exhaustive; the omission of any organization expresses no assessment whatsoever concerning that organization.

   c) The Operator does not cooperate with any of the organizations referenced in the “Support” section, does not maintain any organizational, financial, sponsorship, partnership, or employment relationship with any of them, and derives no benefit from their mention.

   d) The Operator encourages every User considering supporting any of the referenced organizations to independently verify the organization’s current legal status, financial transparency, and current activity before undertaking any legal or financial action.

   e) In the event that any person or organization feels aggrieved in connection with their inclusion in, or omission from, the “Support” section, the Operator declares full readiness to resolve the matter amicably through direct, good-faith correspondence — primarily by way of rectification, addition of context, inclusion or removal of an entry, or any other appropriate modification of the section’s content. Reports should be sent to [email protected].

5. Amendments to these Terms. The Operator may amend these Terms. Amendments shall be announced through:

   a) update of the effective date and version number visible on the page bearing these Terms;

   b) maintenance of the history of changes in the publicly accessible source-code repository of the Site;

   c) in the case of substantive amendments, a site-wide notice published on the Site for a period of 14 days before the amendments enter into force (in implementation of Article 8(4) UŚUDE);

   d) when the newsletter is active — notification of subscribers to the newsletter of substantive amendments by email.

   Amendments shall enter into force on the effective date indicated, not earlier than 14 days from the date of announcement in respect of substantive amendments.

6. Severability. If any provision of these Terms is held by a competent court or supervisory authority to be invalid or unenforceable, the remaining provisions shall continue in full force and effect. The invalid provision shall be replaced by a provision corresponding most closely to the economic and legal purpose pursued.

7. Language regime. These Terms are issued in Polish and in English. In case of discrepancy between language versions, the Polish version prevails.