Terms of Service

§1. General provisions

1. These terms of service (the “Terms”) govern the use of the website eosinophilic-fasciitis.org (the “Service”), operated by Damian “Kuljo” Kuliś (the “Operator”), a natural person resident in Poland:

   • correspondence address: ul. Jarosława Dąbrowskiego 18/6, 02-561 Warsaw, Poland
   • e-mail: contact@eosinophilic-fasciitis.org
   • telephone: +48 600 130 255
   • data protection matters and notices concerning the content of the Service: rodo@eosinophilic-fasciitis.org

2. The Service is a non-commercial informational initiative of a natural person. The Operator carries on no business or professional activity in connection with the Service and is not an entrepreneur within the meaning of Article 43¹ of the Polish Civil Code.

3. Use of the Service constitutes acceptance of these Terms by the user (the “User”).

4. To the extent that the Act of 18 July 2002 on the Provision of Services by Electronic Means (the “PSEM Act”) applies to the Service, these Terms constitute the terms of service referred to in Article 8(1)(1) of that Act.

§2. Scope of services

1. The Service is a publicly accessible source of information about eosinophilic fasciitis (M35.4 under ICD-10, Shulman syndrome).

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

   a) publication of informational content on the disease, its symptoms, diagnosis, treatment and patient experience, in the six language versions of the Service;

   b) receipt of correspondence through the contact form, on the terms set out in §5 and §6;

   c) (planned, currently inactive) a newsletter on developments in knowledge about M35.4, addressed to Users who have subscribed and confirmed their e-mail address through double opt-in.

3. The services are provided free of charge. The Service displays no advertising, contains no affiliate links and takes part in no sponsorship programme or paid placement of content.

4. The Service is not a medical device within the meaning of Article 2(1) of Regulation (EU) 2017/745. The Operator carries on no medical activity and provides no health services within the meaning of Article 2(1)(10) of the Act of 15 April 2011 on Medical Activity. The nature of the medical content is set out in §7.

§3. Technical requirements and availability

1. Use of the Service requires a device with Internet access and a web browser supporting HTML5 and CSS3. JavaScript is optional for reading content and required for submitting the contact form.

2. The Operator does not guarantee uninterrupted availability of the Service. Interruptions may result from maintenance, publication of new versions of the Service, force majeure, and events on the side of the providers of hosting, DNS and e-mail delivery services engaged by the Operator.

3. The Operator’s liability for damage connected with unavailability of the Service is governed by §7(4).

§4. Formation and termination of contracts

1. The contract for the supply of informational content is formed when the User begins using the Service and terminates when such use ends. The Service operates no registration and no user accounts.

2. The contract for the contact-form service is a one-off contract. It is formed when the form is submitted and is performed either by the Operator’s reply or by deletion of the message under §5(4). The User may terminate this contract at any time before a reply is sent, by notice to the address given in §1(1).

3. The contract for the newsletter service — once the newsletter is launched — is formed upon confirmation of the subscription through double opt-in and may be terminated by the User at any time, without giving reasons, through the unsubscribe link included in every message or by notice to the Operator.

4. The services referred to in paragraphs 2 and 3 are available only to persons aged 16 or over (§5(6)).

§5. Contact form

1. The contact form serves solely to establish initial contact — for the User to introduce themselves and state the reason for making contact.

2. In the first message the User must not submit:

   a) attachments of any kind;

   b) medical records in any form, in particular referrals, discharge summaries, laboratory or imaging results, histopathology reports or consultant opinions;

   c) information about their state of health beyond what is necessary to state the reason for making contact (typically a single sentence such as “I am a patient with M35.4 and I would like to share my story”); in particular, the User must not submit lists of medicines and dosages, clinical histories, dates of clinical events, or data identifying treating physicians;

   d) any other special category data within the meaning of Article 9(1) of Regulation (EU) 2016/679 (the “GDPR”).

   A notice setting out the scope defined in this paragraph is displayed next to the contact form.

3. The Operator processes the data contained in the first message solely in order to reply, on the basis of the User’s consent (Article 6(1)(a) GDPR and, as regards self-disclosed health data, Article 9(2)(a) GDPR), in accordance with the principle of data minimisation (Article 5(1)(c) GDPR).

4. Where a message exceeds the scope defined in paragraph 2 — in particular where it contains attachments or medical records — the Operator:

   a) reads it only to the extent necessary to identify the sender, the return address and the general reason for contact;

   b) permanently deletes it, together with any attachments, within 30 days of receipt;

   c) confirms to the sender the deletion, its reason, and the proper route for initial contact.

   This procedure is based on Article 5(1)(c) GDPR and Article 17(1)(d) GDPR, there being no basis under Article 9(2) GDPR for unsolicited special category data.

5. The User may withdraw the consent referred to in paragraph 3 at any time and request deletion of the correspondence. Withdrawal does not affect the lawfulness of processing carried out before withdrawal (Article 7(3) GDPR). The User’s remaining rights are set out in the Privacy Policy.

6. Age requirement. The contact form is intended for persons aged 16 or over (Article 8(1) GDPR). A person under 16 may use the form only through a parent or legal guardian giving consent on their behalf.

§6. Cooperation on publishing a patient story or clinician contribution

1. Following the exchange of initial correspondence under §5, the Operator and the User may enter into a cooperation procedure for publishing on the Service:

   a) a patient story or related material — where the User acts as a person sharing their own patient experience; or

   b) a clinician contribution — expert commentary, a case discussion, a literature review or other substantive material — where the User acts as a physician, another healthcare professional or a researcher.

   The procedure comprises the five stages set out in paragraphs 2 to 6 and applies identically to both categories of material.

2. Stage 1 — initial contact. The User sends an introductory message through the contact form, within the scope defined in §5(2).

3. Stage 2 — individual arrangements. The parties agree and record in correspondence the scope of the materials, the purpose and form of publication, and any limits on further distribution. At this stage the User gives explicit consent to the processing of special category data (Article 9(2)(a) GDPR) for the specifically agreed scope; otherwise the basis for processing is Article 6(1)(a) and (b) GDPR.

4. Stage 3 — transfer of materials. The User transfers only the materials agreed at Stage 2.

5. Stage 4 — drafting and preview. The Operator prepares the material and sends it to the User for approval before publication.

6. Stage 5 — approval, correction or withdrawal. The User approves the material, in which case it is published; submits comments, in which case the Operator repeats Stage 4; or withdraws from the cooperation without giving reasons.

7. The User may withdraw consent or withdraw from the cooperation at any stage. In that case the Operator:

   a) permanently deletes all materials received from the User and all drafts prepared on their basis, within 30 days of receiving the statement;

   b) publishes no content concerning the User, their state of health or their professional contribution;

   c) keeps confidential the fact that discussions took place and the content of the correspondence received, beyond what is publicly available;

   d) may retain the minimum record of correspondence necessary to demonstrate compliance with the GDPR (Article 5(2) GDPR), for no longer than 3 years.

   Withdrawal of consent does not affect the lawfulness of processing carried out before withdrawal (Article 7(3) GDPR).

8. The consequences of publication are set out in §8(2) and in §5(4) of the Privacy Policy.

§7. Nature of the content and liability

1. The content of the Service is informational and educational. It does not constitute medical advice, diagnosis, prognosis or a treatment recommendation, and does not replace consultation with a physician or another authorised healthcare professional.

2. The Operator is a patient diagnosed with M35.4, not a clinician. Treatment decisions concerning any person rest with that person’s treating physician.

3. The Operator takes care to keep the medical content of the Service accurate, current and sourced; the Operator does not, however, warrant its completeness, freedom from error, or suitability in any individual clinical situation.

4. The Operator’s liability for damage arising in connection with use of the Service is excluded to the fullest extent permitted by law. The exclusion does not cover damage caused intentionally (Article 473 § 2 of the Polish Civil Code) or liability that cannot be excluded under mandatory provisions of law, in particular liability for personal injury.

5. The full text of the medical disclaimer is published at /<language>/medical-disclaimer.

6. Content concerning law, statutory entitlements, administrative proceedings and insurance is covered by a separate Legal Disclaimer published at /<language>/law-disclaimer.

§8. Copyright and licensing

1. Textual content of the Service authored by the Operator — articles, the content of other pages, the texts of the legal documents and the localised interface content in all language versions — is made available under the Creative Commons Attribution-ShareAlike 4.0 International licence (CC BY-SA 4.0), available at https://creativecommons.org/licenses/by-sa/4.0/legalcode.

2. The licence permits reproduction, distribution, adaptation and translation of the content, including for commercial purposes, provided that:

   a) the Operator is credited as author, the source is identified (the URL of the original publication) and the licence is identified;

   b) any adaptation is made available under the same or a compatible licence;

   c) no legal or technological restrictions beyond the licence are imposed.

   The licence is irrevocable as regards copies already distributed.

3. The pseudonym “Kuljo” and the graphic signs of the Service are not covered by the licence referred to in paragraph 1. A person using the content credits authorship by the Operator’s name and may not use those signs in a way suggesting that the Operator or the Service endorses an adaptation.

4. The source code of the Service, its build configuration, components, templates and styles are not covered by the licence referred to in paragraph 1. All rights in them are reserved; these Terms grant no licence to them.

5. Works of third parties are quoted within the limits of Article 29 of the Act of 4 February 1994 on Copyright and Related Rights. Graphic materials are works of the Operator or are used under separately obtained licences.

6. Notices concerning the content of the Service — in particular allegations of infringement of copyright, personality rights or other rights — are to be sent to rodo@eosinophilic-fasciitis.org, identifying the notifier and their contact details, the URL and the passage complained of, and the basis of the notice. The Operator deals with the notice within 14 days of receipt, either by removing or amending the content complained of or by giving a reasoned reply.

§9. Complaints and applicable law

1. Complaints concerning services provided by electronic means are to be sent to rodo@eosinophilic-fasciitis.org, identifying the User, the event complained of and the outcome sought.

2. The Operator considers the complaint and informs the User of the outcome by e-mail within 14 days of receipt.

3. Requests to exercise data subject rights (Articles 15 to 22 GDPR) are dealt with within the time limits laid down in Article 12(3) GDPR — one month from receipt, extendable by two months for complex requests. The procedure is set out in the Privacy Policy.

4. The Operator seeks to resolve disputes amicably. The Operator does not undertake to use consumer alternative dispute resolution; this does not preclude that route being chosen by agreement of both parties.

5. These Terms are governed by Polish law. They neither exclude nor limit mandatory provisions of the law of the User’s habitual residence that apply to the User. Jurisdiction is determined by the general rules of law.

§10. Final provisions

1. The User must not supply unlawful content through the services of the Service (Article 8(3)(2)(b) of the PSEM Act), in particular content infringing the rights of third parties, defamatory content, content inciting hatred, unsolicited commercial communications, or content directed against the security of the Service or the Operator’s infrastructure.

2. Geographical scope. The Service is addressed to residents of the European Union and the European Economic Area and is designed in accordance with Polish law and European Union law. The Operator does not adapt the Service to the legal requirements of jurisdictions outside the EU and the EEA.

3. No donations. The Operator neither accepts nor handles donations for the Service or for the Operator in connection with the Service, and does not act as an intermediary in fundraising conducted by other entities.

4. External links and the “Support” section.

   a) Links to third-party websites are published for information only. The Operator is not responsible for the content, availability or currency of those websites, including changes made after a link is published.

   b) The organisations listed in the “Support” section are a non-exhaustive, subjective selection by the Operator. Listing an organisation is neither a recommendation nor an assessment of its credibility, transparency or effectiveness, and omission of an organisation expresses no negative assessment. The Operator has no organisational, financial, sponsorship or employment relationship with any of the organisations listed and derives no benefit from listing them. Comments on the content of that section may be sent to rodo@eosinophilic-fasciitis.org and are dealt with under §8(6).

5. Amendments. The Operator may amend these Terms. Amendments are announced by updating the version number and effective date shown on the page containing the Terms and by maintaining a change history in the publicly available source-code repository of the Service. Material amendments are additionally announced visibly on the Service for 14 days before they take effect and, once the newsletter is active, by e-mail to subscribers. Amendments take effect on the date stated in the Terms, and no earlier than 14 days after a material amendment is announced.

6. Severability. If any provision of these Terms proves invalid or ineffective, the remaining provisions remain in force. An invalid provision is replaced by the provision closest to its purpose that is permissible in law.