# FESCA

> Increasing scleroderma awareness


## Posts

- [Scleroderma 102: All you need to know](https://fesca-scleroderma.eu/scleroderma-101-all-you-need-to-know-2/): Lorem ipsum dolor sit amet consectetur adipiscing elit. Quisque faucibus ex sapien vitae pellentesque sem placerat. In id cursus mi pretium tellus duis convallis. Tempus leo eu aenean sed diam urna tempor. Pulvinar vivamus fringilla lacus nec metus bibendum egestas. Iaculis massa nisl malesuada lacinia integer nunc posuere. Ut hendrerit semper vel class aptent taciti sociosqu. Ad litora torquent per conubia nostra inceptos himenaeos. Lorem ipsum dolor sit amet consectetur adipiscing elit. Quisque faucibus ex sapien vitae pellentesque sem placerat. In id cursus mi pretium tellus duis convallis. Tempus leo eu aenean sed diam urna tempor. Pulvinar vivamus fringilla lacus […]
- [Scleroderma 101: All you need to know](https://fesca-scleroderma.eu/scleroderma-101-all-you-need-to-know/): Lorem ipsum dolor sit amet consectetur adipiscing elit. Quisque faucibus ex sapien vitae pellentesque sem placerat. In id cursus mi pretium tellus duis convallis. Tempus leo eu aenean sed diam urna tempor. Pulvinar vivamus fringilla lacus nec metus bibendum egestas. Iaculis massa nisl malesuada lacinia integer nunc posuere. Ut hendrerit semper vel class aptent taciti sociosqu. Ad litora torquent per conubia nostra inceptos himenaeos. Lorem ipsum dolor sit amet consectetur adipiscing elit. Quisque faucibus ex sapien vitae pellentesque sem placerat. In id cursus mi pretium tellus duis convallis. Tempus leo eu aenean sed diam urna tempor. Pulvinar vivamus fringilla lacus […]
- [World Scleroderma Day 2025](https://fesca-scleroderma.eu/world-scleroderma-day-2025/): As FESCA, we exist to raise awareness of scleroderma as a chronic condition, engage with policymakers to drive change and unite the community of people living with the disease who have unique insight into how it feels.  To do that, however, we must first make sure scleroderma is visible to those who need to see it.  We cannot help those living with scleroderma if they don’t know they have it. They, in turn, cannot understand their disease, if HCPs do not know what they are looking for.   By focusing on awareness and education, we can help make the unseen about […]
- [Advocating for Change: The Role of Fesca in Scleroderma Awareness and Care](https://fesca-scleroderma.eu/advocating-for-change-the-role-of-fesca-in-scleroderma-awareness-and-care/): Understanding Scleroderma: A Complex Challenge Scleroderma is an autoimmune disease characterized by the hardening and tightening of the skin and connective tissues. This complex condition stems from an overproduction of collagen, which can lead to a variety of symptoms and complications, varying widely among patients. Scleroderma is classified into two main types: localized scleroderma, which primarily affects the skin, and systemic scleroderma, which can impact internal organs, such as the lungs, heart, and gastrointestinal tract. Each patient’s experience with scleroderma can be markedly different, with symptoms ranging from mild skin changes to severe complications that can affect longevity and quality […]
- [Understanding FESCA: A Pan-European Initiative for Scleroderma Awareness](https://fesca-scleroderma.eu/understanding-fesca-a-pan-european-initiative-for-scleroderma-awareness/): What is FESCA? FESCA, the Federation of European Scleroderma Associations AISBL, serves as a vital umbrella organization dedicated to the promotion and support of scleroderma awareness across Europe. This federation plays a crucial role in uniting various national groups, striving towards common objectives that align with the unique needs and goals of each member organization. Our Member Organizations Currently, FESCA comprises 23 member organizations from 18 different countries. This diversity enriches the federation’s endeavors, allowing for the sharing of knowledge, resources, and support mechanisms among member states. Each organization contributes unique insights into regional challenges and strategies, enhancing the collective […]
- [FESCA: Advocating for Scleroderma Awareness and Support across Europe](https://fesca-scleroderma.eu/fesca-advocating-for-scleroderma-awareness-and-support-across-europe/): Introduction to FESCA The Federation of European Scleroderma Associations (FESCA) has emerged as a pivotal organization in the realm of scleroderma awareness and advocacy across Europe. Established to address the significant challenges faced by individuals affected by this rare autoimmune condition, FESCA serves as an umbrella organization uniting various national scleroderma associations. Its formation was driven by the collective recognition of the need for a cohesive approach to raise awareness, provide support, and encourage research initiatives on scleroderma throughout the continent. FESCA’s mission is multifold, focusing on enhancing the lives of individuals diagnosed with scleroderma while fostering a network of […]

## Pages

- [Member Training courses](https://fesca-scleroderma.eu/members-area/member-training-courses/): Download PDFs from Training Milan 2025 Download
- [Member Login](https://fesca-scleroderma.eu/member-login/): [wpuf-login]
- [Member share](https://fesca-scleroderma.eu/members-area/member-share/): News other members shared Create a post Share information with other members [wpuf_form id=”10115″]
- [Members area](https://fesca-scleroderma.eu/members-area/): Training courses Access training materials designed for FESCA member organisations. Enter Useful information Find documents, guidelines, and helpful resources to support your organisation’s daily work and communication activities. Enter Member share Share your news, events, or success stories with other FESCA members. Upload an image and short description — your post will appear in the member news feed. Enter Members Q&A Join the discussion with other member organisations. Ask questions, exchange experiences, and collaborate in our private forum. Enter
- [How can you as patient help yourself?](https://fesca-scleroderma.eu/how-can-you-as-patient-help-yourself/): Click on each body part tooltip to see details 01 Tight Mouth Stretching, oral care, moisturizing the mucous membranes 02 Joints Rehabilitation, exercises to improve joint range of motion 03 Muscle Weakness Physiotherapy, exercise 04 Kidneys Regular blood pressure monitoring In case of high blood pressure, swelling in lower limbs, headaches, or shortness of breath – contact your doctor! 05 Intestines Exercise to support better peristalsis 06 Skin Stretching, moisturizing, sun protection 07 Raynaud’s Phenomenon Keep the body warm – gloves, socks, functional clothing Movement for better circulation Stop smoking! 08 Heart Regular check-ups as recommended by a doctor (ECHO, […]
- [Educational videos](https://fesca-scleroderma.eu/educational-videos/): 1. Diagnosis and Classification of Systemic Sclerosis (SSc) An informative webinar detailing the diagnostic criteria and classification of systemic sclerosis, including a patient interview emphasizing early diagnosis. 2. Explaining Systemic Sclerosis (SSc) to Family and Friends A practical guide to help patients explain systemic sclerosis to their loved ones, fostering understanding and support. 3. Get Moving: Reclaiming What Systemic Sclerosis Took Away (English) This session emphasizes the role of physical activity in managing systemic sclerosis and improving patients’ quality of life. 4. Fatigue, Invisible but Heavy (English) A discussion on the often-overlooked symptom of fatigue in systemic sclerosis patients, offering […]
- [World Scleroderma Day 2025](https://fesca-scleroderma.eu/world-scleroderma-day/world-scleroderma-day-2025/): Table of Contents Previous Years   World Scleroderma Day 2015 World Scleroderma Day 2016 World Scleroderma Day 2017 World Scleroderma Day 2018 World Scleroderma Day 2019 World Scleroderma Day 2020 World Scleroderma Day 2021 World Scleroderma Day 2025 As FESCA, we exist to raise awareness of scleroderma as a chronic condition, engage with policymakers to drive change and unite the community of people living with the disease who have unique insight into how it feels.  To do that, however, we must first make sure scleroderma is visible to those who need to see it.  We cannot help those living with […]
- [World Scleroderma Day 2016](https://fesca-scleroderma.eu/world-scleroderma-day/world-scleroderma-day-2016/): Table of Contents Previous Years   World Scleroderma Day 2015 World Scleroderma Day 2016 World Scleroderma Day 2017 World Scleroderma Day 2018 World Scleroderma Day 2019 World Scleroderma Day 2020 World Scleroderma Day 2021 Hand in Hand for a better future This World Scleroderma Day 2016 we go hand in hand for a better future. We call for explicit plans by governments and health policy makers at National and European level to improve the livelihood of people with scleroderma.   Join us – go HAND IN HANDWe invite you to take a picture Hand in Hand with your camera on […]
- [World Scleroderma Day 2021](https://fesca-scleroderma.eu/world-scleroderma-day/world-scleroderma-day-2021/): Table of Contents Previous Years   World Scleroderma Day 2015 World Scleroderma Day 2016 World Scleroderma Day 2017 World Scleroderma Day 2018 World Scleroderma Day 2019 World Scleroderma Day 2020 World Scleroderma Day 2021 I am my passion not my disease!Scleroderma and COVID-19 will not take my smile! Scleroderma is a rare autoimmune disease that stiffens the skin, turning simple daily activities into real challenges. It can affect all organs in addition to the skin, and while treatments exist, there is currently no cure. More research is urgently needed. Help us to keep smiling by donating to research! Again as […]
- [World Scleroderma Day 2020](https://fesca-scleroderma.eu/world-scleroderma-day/world-scleroderma-day-2020/): Table of Contents Previous Years   World Scleroderma Day 2015 World Scleroderma Day 2016 World Scleroderma Day 2017 World Scleroderma Day 2018 World Scleroderma Day 2019 World Scleroderma Day 2020 World Scleroderma Day 2021 Protect yourself to protect us! Scleroderma is a rare autoimmune disease that stiffens the skin, turning simple daily activities into real challenges. It can affect all organs in addition to the skin, and while treatments exist, there is currently no cure. More research is urgently needed. Help us to keep smiling by donating to research! June 29th is World Scleroderma Day As we face the challenge […]
- [World Scleroderma Day 2019](https://fesca-scleroderma.eu/world-scleroderma-day/world-scleroderma-day-2019/): Table of Contents Previous Years   World Scleroderma Day 2015 World Scleroderma Day 2016 World Scleroderma Day 2017 World Scleroderma Day 2018 World Scleroderma Day 2019 World Scleroderma Day 2020 World Scleroderma Day 2021 Scleroderma will not take my smile Scleroderma is a rare autoimmune disease that stiffens the skin, turning simple daily activities into real challenges. It can affect all organs in addition to the skin, and while treatments exist, there is currently no cure. More research is urgently needed. Help us to keep smiling by donating to research! We invite you from all over the world to post […]
- [World Scleroderma Day 2018](https://fesca-scleroderma.eu/world-scleroderma-day/world-scleroderma-day-2018/): Table of Contents Previous Years   World Scleroderma Day 2015 World Scleroderma Day 2016 World Scleroderma Day 2017 World Scleroderma Day 2018 World Scleroderma Day 2019 World Scleroderma Day 2020 World Scleroderma Day 2021 Scleroderma will not take my smile Scleroderma is a rare autoimmune disease that stiffens the skin, turning simple daily activities into real challenges. It can affect all organs in addition to the skin, and while treatments exist, there is currently no cure. More research is urgently needed. Help us to keep smiling by donating to research! We invite you from all over the world to post […]
- [World Scleroderma Day 2017](https://fesca-scleroderma.eu/world-scleroderma-day/world-scleroderma-day-2017/): Table of Contents Previous Years   World Scleroderma Day 2015 World Scleroderma Day 2016 World Scleroderma Day 2017 World Scleroderma Day 2018 World Scleroderma Day 2019 World Scleroderma Day 2020 World Scleroderma Day 2021 Scleroderma will not take my smile Scleroderma is a rare autoimmune disease that turns simple daily activities into real challenges. It is life-threatening and currently has no cure. But patient organisations are fighting back. Join us for World Scleroderma Day 2017 as we spread awareness and support research. We refuse to lose our smiles! We invite you from all over the world to post a picture/video […]
- [World Scleroderma Day 2015](https://fesca-scleroderma.eu/world-scleroderma-day/world-scleroderma-day-2015/): Table of Contents Previous Years   World Scleroderma Day 2015 World Scleroderma Day 2016 World Scleroderma Day 2017 World Scleroderma Day 2018 World Scleroderma Day 2019 World Scleroderma Day 2020 World Scleroderma Day 2021 Unveiling Scleroderma This World Scleroderma Day 2015 we will be “unveiling Scleroderma”. Organisations across the globe are taking part in the campaign to raise awareness for 2.5 million individuals diagnosed with scleroderma worldwide. 25 seconds for 2.5 million You can help us raise awareness by recording a 25-second video about your experience of scleroderma and sharing with your social networks. Use the hashtags to view your […]
- [World Scleroderma day](https://fesca-scleroderma.eu/world-scleroderma-day/): What is World Scleroderma Day? Held every year on June 29 A global awareness day for people living with scleroderma Aims to raise awareness, support patients and inspire solidarity Go to this year’s campaign Take a look back – Past World Scleroderma Day Campaigns WSD 2025 WSD 2021 WSD 2020 WSD 2019 WSD 2018 WSD 2017 WSD 2016 WSD 2015 WSD 2025 WSD 2021 WSD 2020 WSD 2019 WSD 2018 WSD 2017 WSD 2016 WSD 2015 Why June 29th matters World Scleroderma Day is marked on June 29 in honour of artist Paul Klee, who lived with systemic scleroderma. His […]
- [Patient Congress 2018](https://fesca-scleroderma.eu/world-congress/patient-congress-2018/): Table of Contents Introduction The 5th Systemic Sclerosis World Congress held in Bordeaux, France on February 15-17, 2018 combines hands-on workshops, lectures, oral presentations and satellite sessions, providing an exciting mix of experiences that will be put at disposal for all attendees that devote their work to people with scleroderma. The Patient Program run by FESCA will consist of interactive sessions of lectures and discussions between doctors and medical staff and patients Program The Patient Program for the Fifth World Systemic Sclerosis Congress will consist of interactive sessions of lectures and discussions between doctors and medical staff and patients. Lectures […]
- [Patient Congress 2016](https://fesca-scleroderma.eu/world-congress/patient-congress-2016/): Table of Contents Introduction This 4th Systemic Sclerosis World congress that was held in Lisbon, Portugal – February 18-20, 2016 was consisted of the best experience we had in the previous congresses, emphasising clinically relevant developments in the field with a focus on aspects of care to improve the quality of life for patients with scleroderma worldwide. The combination of hands-on workshops, lectures, oral presentations, and sponsored sessions provided an exciting mix of extraordinary experiences. Program information The Patient Programme for the Fourth World Systemic Sclerosis Congress will consist of interactive sessions of lectures and discussion between consultants and patients. […]
- [Patient Congress 2014](https://fesca-scleroderma.eu/world-congress/patient-congress-2014/): Table of Contents Introduction The Third Systemic Sclerosis World Congress was held in Rome from 6-8 February 2014, and an audience with His Holiness Pope Francis preceded it for people with scleroderma. This was a moving and momentous beginning to an extremely informative event, where scleroderma specialists and people with scleroderma gave talks and workshops during the two days of the patient congress. Message from the president, Ann Tyrrell Kennedy The Federation of European Scleroderma Associations aisbl (FESCA), working with the World Scleroderma Foundation (WSF), developed twin congresses, one for patients and one for medical professionals, so that each might […]
- [Patient Congress 2010](https://fesca-scleroderma.eu/world-congress/patient-congress-2010/): Table of Contents Introduction In Florence on February 12, 2010, the Federation of European Scleroderma Associations (FESCA) held the first World Scleroderma Patient Congress. A dual event organised with EUSTAR, it offered separate conferences for doctors and patients, with talks in English on all aspects of the disease. Summary of the event In Florence on February 12, 2010, the Federation of European Scleroderma Associations (FESCA) held the first World Scleroderma Patient Congress. It was part of a dual event organised with EUSTAR (EULAR Scleroderma Trials and Research), in the form of a 3-day scientific congress and simultaneous 1-day patient congress, […]
- [European Parliament 2023](https://fesca-scleroderma.eu/european-parliament/european-parliament-2023/): Table of Contents Paving the way for rare diseases patients: Addressing unmet needs for an improved quality of life and care Empowering scleroderma patients through policy and advocacy 14 November 2023, European Parliament, 2pm-4pm, Room 3H1 On 14 November, MEP Patrizia Toia (S&D, IT) and FESCA are hosting an event on “Paving the way for rare diseases patients: Addressing Unmet Needs for an Improved Quality of Life and Care” in the European Parliament. Building upon the momentum of 2022, FESCA has continued its successful ‘Find the Light to Bloom’ campaign in 2023′, illuminating the unmet needs of people living with scleroderma and the challenges […]
- [European Parliament 2022](https://fesca-scleroderma.eu/european-parliament/european-parliament-2022/): Table of Contents Advancing equitable rare disease diagnosis and care: How EU health policy can solve existing challenges Stakeholders’ reflections on systemic sclerosis 27 September 2022, European Parliament, 3pm-5pm, Room 3H1 Under the patronage of the European Parliament and the Czech Presidency of the Council of the EU, MEP Patrizia Toia (S&D, IT) will be hosting FESCA’s event “Advancing equitable rare disease diagnosis and care: How EU health policy can solve existing challenges: Stakeholders’ reflections on systemicsclerosis”. On World Scleroderma Day 2022 (29 June), FESCA launched the “Find the Light to Bloom”  campaign, which seeks to raise awareness of the unmet needs of those […]
- [European Parliament](https://fesca-scleroderma.eu/european-parliament/): Archive of European parliament Events European parliament Event 2023 European parliament Event 2022
- [Patient Congress 2012](https://fesca-scleroderma.eu/world-congress/patient-congress-2012/): Table of Contents Introduction The Second World Scleroderma Patient Congress was held on February 2nd – 4th, 2012, in the Congressional Hall in Madrid. The scientific programme for the congress is developed and run by EUSTAR; the patient programme is developed and run by FESCA. The patient congress provided a wide variety of talks that were found almost without exception to be informative and interesting. Summary of the event This congress is biennial, and was first held 2010 in Florence. Since that time, it has grown significantly. Held under the auspices of the World Scleroderma Foundation (WSF), a Swiss-based foundation […]
- [Virtual Patient Congress 2020](https://fesca-scleroderma.eu/world-congress/virtual-patient-congress-2020/): Table of Contents Introduction Dear Participant, Unfortunately, due the COVID-19 pandemic, we were forced to first postpone and then completely cancel the World Congress in Prague in 2020. Along with the steering committee, we came to the conclusion that due to the uncertainty of the virus progression and the high possibility of a second wave of the virus outbreak that we should explore a virtual solution of the 6th Systemic Sclerosis World Congress. We have worked very hard to make this happen and we are very pleased to offer you a virtual congress experience. Best regards,Sue Farrington, PresidentFESCA – Federation […]
- [Patient Congress 2022](https://fesca-scleroderma.eu/world-congress/patient-congress-2022/): Table of Contents Introduction Dear Participant, We cannot wait for you to join us at the World Scleroderma Patient Congress 2022 on Friday 11th March and Saturday 12th March for two mornings of presentations and interactive sessions covering the most current information on scleroderma. Every other year, FESCA host the World Scleroderma Patient Congress to discuss important developments in medicine and strategies for supporting those with scleroderma. The Congress happens alongside the World Scleroderma Congress for clinicians, organised by the World Scleroderma Foundation. We have carefully selected each of the session speakers and chairs so that they effectively represent patients, […]
- [Patient Congress 2024](https://fesca-scleroderma.eu/world-congress/patient-congress-2024/): Table of Contents Congress report With the 8th Systemic Sclerosis Patient World Congress now behind us, we want to thank all attendees, speakers, moderators, organisers and sponsors for their contributions to this incredible event! We are very pleased to share the report from the Congress which, we hope, will help to solidify the knowledge shared on site and relive the experience and atmosphere of being together in Prague. Opening with a message from FESCA’s president and vice-president, through written session summaries and links to recordings, information on attendance and feedback from participants, we hope the report will serve as a […]
- [World congress](https://fesca-scleroderma.eu/world-congress/): Archive of previous World congresses (WSC) Patient congress 2010 Patient congress 2012 Patient congress 2014 Patient congress 2016 Patient congress 2018 Virtual Patient congress 2020 Patient congress 2022 Patient congress 2024
- [FESCA Members](https://fesca-scleroderma.eu/fesca-members/): List of FESCA Members Belgium (Dutch) CIB-Liga vzw Lindenlaan 15B-3680 Maaseik Tel: +32 89 73 41secretariaat@cibliga.bewww.cibliga.be Belgium (French) APSB – Association des Patients Sclérodermiques de Belgique Rue Du Pont à Rieu 13 i7500 Saint Maur Tel: 0032 485 178297sclerodermie@clair.bewww.sclerodermie.be Bulgaria Bulgarian Organization for Patients with Rheumatic Diseases- BOPRD https://www.revmatologia.org/ Tel: +359 889974923    Croatia HUOS – Hrvatska udruga oboljelih od sklerodermije Brozova 2610000 Zagreb Tel: +3851 36 68 098Fax: +3851 36 48 143huos@huos.hrwww.huos.hr    Cyprus Αντιρευματικός Σύνδεσμος Κύπρου (Cyprus Antirheumatic Association) Onisilou 16, app, Aglantzia2121 NicosiaCyprus Tel: +357 22 428285Fax: +3851 36 48 143cyplar@cytanet.com.cywww.rheumatism.org.cy Czech Republic Revma liga Revmatologický ústav […]
- [Patient Congress 2026](https://fesca-scleroderma.eu/world-congress/patient-congress-2026/): Table of Contents Home Welcome to the 9th Systemic Sclerosis Patient World Congress! 6-7 March 2026, Athens Dear participant FESCA is delighted to once again collaborate with the World Scleroderma Foundation to present the Patient Congress, held in collaboration with the 9th Systemic Sclerosis World Congress. Since our inaugural Congress in 2010, this event has attracted international attention from the scleroderma community, serving as a vital forum for patient education, networking, skill development, and the sharing of insights and experiences. Designed by patients, for patients, the program offers attendees the chance to learn from leading scleroderma experts and patient advocates […]
- [Reports Archive](https://fesca-scleroderma.eu/reports-archive/): Linked reports (downloadable docs) FESCA Annual Report 2020 FESCA Annual Report 2021 FESCA Annual Report 2022
- [Partners](https://fesca-scleroderma.eu/partners/): Partners – Pharma Sponosrs Boehringer Ingelheim is a global, research-driven pharmaceutical company committed to improving human and animal health. As a family-owned business, BI focuses on developing innovative therapies in areas of unmet medical need, particularly in respiratory, cardiovascular, oncology, and central nervous system diseases. Amgen is a leading biotechnology company that uses advanced science and innovation to develop therapies for serious illnesses. With a focus on areas such as oncology, nephrology, cardiology, and inflammation, Amgen leverages cutting-edge biologics and genetics to improve patient outcomes. Novartis is a global healthcare company based in Switzerland that reimagines medicine to improve and […]
- [FESCA Academy 2025](https://fesca-scleroderma.eu/fesca-academy-2025/): Scleroderma Patient Academy – Face-to-Face Advocacy Training in Milan Milan, 16 May 2025Full-day training  Patients living with scleroderma face a range of complex challenges that are often underrepresented in healthcare systems and policies. To help close this gap, patient advocates play a vital role in raising awareness, influencing change, and ensuring better outcomes for the scleroderma community. But advocacy is not only about passion—it requires knowledge, strategy, and the right tools. That is why FESCA is proud to organise a Face-to-Face Advocacy Training in Milan on 16th May 2025—a full day of interactive, high-quality training tailored for scleroderma patient advocates. […]
- [Use of FESCA logo](https://fesca-scleroderma.eu/use-of-fesca-logo/): Guidelines for Using the FESCA Logo Introduction The Federation of European Scleroderma Associations (FESCA) logo represents the backbone of our brand and mission. It is a vital symbol of our commitment to raising awareness about scleroderma. The logo reflects the power of unity and the enthusiasm of its member organisations and individuals. The key visual—four people with joined hands—represents the idea that “we go hand in hand to raise scleroderma awareness!” To ensure consistency and maintain the integrity of our visual identity across all platforms, please follow these usage guidelines. 1. Approved Logo Versions Primary Logo: Use the full-colour logo […]
- [Article of association](https://fesca-scleroderma.eu/article-of-association/): FEDERATION OF EUROPEAN SCLERODERMA ASSOCIATIONS: ARTICLES OF ASSOCIATION Article 1.An international non-profit association called “FEDERATION OF EUROPEAN SCLERODERMA ASSOCIATIONS” or, in its abbreviated form, “FESCA” is hereby incorporated.Hereinafter referred to as the “Association”.The Association has legal personality and is governed by the Belgian Code of Companies and Associations dated 23 March 2019 (hereinafter referred to as the “Code”) as amended and modified by subsequent laws. Article 2.The seat of the Association is located in the Walloon Region. Article 3.All deeds, invoices, advertisements, publications, letters, order forms, websites and other documents, whether or not in electronic form, issued by the Association […]
- [FESCA’s priorities](https://fesca-scleroderma.eu/fescas-priorities/): Table of Contents AMBITIONS 1. Healthcare​ We campaign for equal & timely access to the best standards of treatment & care. Ambition Key Objectives What Will Success Look Like? Healthcare (H) H1 Promote and champion the need for earlier diagnosis of Scleroderma  Average time to diagnosis is reduced     H2 Increase equity of access to treatment & care (both pharma and non-pharma)  Patients report improved access to successful treatments H3 Increase access to non-pharmacological interventions/treatments  Patients report improved access to non-pharma treatments  H4 Ensure quality standards* of treatment and care are developed and implemented across the patient pathway  Quality Standards are developed and implemented  […]
- [Vision and Mission and Goal](https://fesca-scleroderma.eu/vision-and-mission-and-goal/): VISION A world in which everyone with Scleroderma receives timely access to the same level of successful care from fully informed healthcare professionals, followed ultimately by acure. MISSION Our mission is to provide information to people with scleroderma, increase awareness on an international level, and advocate for equitable treatments for people with scleroderma throughout Europe. GOAL Every Scleroderma patient to receive gold standard therapy throughout their journey.
- [The History of FESCA](https://fesca-scleroderma.eu/the-history-of-fesca/): FESCA the Federation of European Scleroderma Associations IVZW 2005The beggining In 2005, Marco Matucci Cerinic gathered people with scleroderma and representatives from scleroderma organisations from Europe together at EULAR in Vienna.  We were also joined by Nele Cayers & Peter Bakker who didn’t have SSc but another connective tissue disease SLE and Elaine Furst from the Scleroderma Foundation in the USA all asked by Marco to join us in exploring ways in enhancing the patient voice.  PARE were also invited to this first meeting to explain the importance of collaboration between people living with rheumatic conditions, research and the medical […]
- [Findings from the 2023 FESCA European patient survey](https://fesca-scleroderma.eu/findings-from-the-2023-fesca-european-patient-survey/): Table of Contents The Federation of European Scleroderma Association (FESCA) Europe-wide 2023 survey was established to highlight the unmet needs of people living with systemic sclerosis (also known as scleroderma), and to bring these issues to policymakers and health authorities to find solutions together. The survey aimed to complement existing clinical data with data from lived experience of diagnosis, treatment and quality of life. Based on survey findings, FESCA both highlights and provides recommendations for five key opportunities for improvement. View full report Summaries of findings We’re a top-rated humanitarian organization focused on ending generational poverty through a proven approach. […]
- [Accessibility statement](https://fesca-scleroderma.eu/accessibility-statement/): Accessibility Statement for https://fesca-scleroderma.eu/ Federation of European Scleroderma Associations aisbl is committed to ensuring digital accessibility for people with disabilities. We are continually improving the user experience for everyone and applying the relevant accessibility standards. Conformance status The Web Content Accessibility Guidelines (WCAG) defines requirements for designers and developers to improve accessibility for people with disabilities. It defines three levels of conformance: Level A, Level AA, and Level AAA. Federation of European Scleroderma Associations aisbl is making constant efforts to improve the accessibility of its site and services in the belief that it is our collective moral obligation to allow […]
- [Cookie Policy (EU)](https://fesca-scleroderma.eu/cookie-policy-eu/)
- [Skladište](https://fesca-scleroderma.eu/skladiste/): Croatia – HUOS Austria – Selbsthilfe e.V. Greece – ELEANA Belgium – CIB-Liga vzw Belgium – APSB CYPRUS – Αντιρευματικός Σύνδεσμος Κύπρου UNITED KINGDOM – Scleroderma and Raynaud’s UK SWITZERLAND – Sclerodermie.ch SWEDEN – The Swedish Rheumatism AssociationReumatikerförbundet SPAIN – AEE – Asociación Española de Esclerodermia ROMANIA – Asociatia Pacientilor cu Sclerodermie din RomaniaBucharest PORTUGAL – Liga Portuguesa contra as Doenças Reumáticas PORTUGAL – ADPE – Associação Portuguesa de Doentes com Esclerodermia NORWAY – Norsk Revmatikerforbund NETHERLANDS – Nationale vereniging voor LUPUS, APS, Sclerodermie en MCTD ITALY – GILS – Gruppo Italiano per la Lotta alla Sclerodermia ITALY – AILS […]
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- [Donation Confirmation](https://fesca-scleroderma.eu/donation-confirmation/): [give_receipt]
- [Privacy Policy](https://fesca-scleroderma.eu/privacy-policy/): Privacy Policy Last updated: 23rd April, 2025.This Privacy Policy explains how the Federation of European Scleroderma Associations aisbl (“FESCA”, “we”, “us”, “our”) collects, uses and protects your personal data when you visit our website or interact with us. 1. Who we are FESCA is an International Non-Profit Association registered in Belgium (Registration No. FOJ 15454).Website: https://www.fesca-scleroderma.euEmail: info@fesca-scleroderma.eu 2. What personal data we collect We may collect the following types of personal data: Name, email address, postal address, phone number Payment information (if you make a donation) Any health-related information you voluntarily provide IP address and usage data (via cookies – […]
- [Donor Dashboard](https://fesca-scleroderma.eu/donor-dashboard-2/): [give_donor_dashboard]
- [Donation History](https://fesca-scleroderma.eu/donation-history/): [donation_history]
- [Donation Failed](https://fesca-scleroderma.eu/donation-failed-3/): We're sorry, your donation failed to process. Please try again or contact site support.
- [Donation Confirmation](https://fesca-scleroderma.eu/donation-confirmation-3/): [give_receipt]
- [Sample Page](https://fesca-scleroderma.eu/sample-page/): This is an example page. It’s different from a blog post because it will stay in one place and will show up in your site navigation (in most themes). Most people start with an About page that introduces them to potential site visitors. It might say something like this: Hi there! I’m a bike messenger by day, aspiring actor by night, and this is my website. I live in Los Angeles, have a great dog named Jack, and I like piña coladas. (And gettin’ caught in the rain.) …or something like this: The XYZ Doohickey Company was founded in 1971, […]
- [Campagins List](https://fesca-scleroderma.eu/campagins-list/)
- [Inspring Stories](https://fesca-scleroderma.eu/inspring-stories/)
- [Our Team](https://fesca-scleroderma.eu/our-team/)
- [How We Help](https://fesca-scleroderma.eu/how-we-help/)
- [Core Values](https://fesca-scleroderma.eu/core-values/)
- [Career](https://fesca-scleroderma.eu/career/)
- [Donation](https://fesca-scleroderma.eu/donation/)
- [Page 404](https://fesca-scleroderma.eu/page-404/): Oops! page not found. It looks like nothing was found at this location. You can either go back to the last page or go to homepage. Go Back Homepage
- [Campaigns Grid](https://fesca-scleroderma.eu/campaigns-grid/)
- [Gallery](https://fesca-scleroderma.eu/gallery/)
- [FAQ](https://fesca-scleroderma.eu/faq/)
- [Become A Volunteer](https://fesca-scleroderma.eu/become-a-volunteer/)
- [Contact Us](https://fesca-scleroderma.eu/contact-us/): Contact us Get in Touch Federation of European Scleroderma Associations is an International Non-Profit Association registered in Belgium with Registration No. FOJ 15454 Address Rue du Pont à Rieu 13 i 7500 Saint Maur Belgium Mail us info@fesca-scleroderma.eu
- [Who We Are](https://fesca-scleroderma.eu/who-we-are/)
- [Blog](https://fesca-scleroderma.eu/blog/)
- [FESCA](https://fesca-scleroderma.eu/): World Congress World Scleroderma Day Educational videos How we help. **(This section can be dedicated for SSc info, and the picture on the right can be an interactive human body ) Give a future full of choices Health Education Protection Every person deserves a healthy start Nunc diam nulla, commodo sed neque in, dignissim volutpat orci. Maecenas tempus massa, in feugiat. Vestibulum ante ipsum primis in faucibus orci luctus et ultrices posuere cubilia curae. Phasel rhoncus, purus et consect etur volutpat, turpis eros sodales orci, vel vulputate. Learn More Treatment and Medication Nunc diam nulla, commodo sed neque in, dignissim volutpat orci. […]
- [all forms](https://fesca-scleroderma.eu/all-forms/): [give_form_grid columns=”3″ show_goal=”true” image_size=”unity-featured-image-large” show_excerpt=”true” show_featured_image=”true” display_style=”redirect” forms_per_page=”6″]
- [Donation History](https://fesca-scleroderma.eu/donation-history-2/): [donation_history]
- [Donation Failed](https://fesca-scleroderma.eu/donation-failed-2/): We're sorry, your donation failed to process. Please try again or contact site support.
- [Donation Confirmation](https://fesca-scleroderma.eu/donation-confirmation-2/): [give_receipt]
- [Coming soon](https://fesca-scleroderma.eu/coming-soon/): Coming soon This page is still under construction.Our team is working hard to bring you something great. Thank you for your patience! Return to homepage


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