Find the Light to Bloom
About the campaign
Each year, on 29 June, the world’s scleroderma community comes together to recognize World Scleroderma Day.
It is a day to recognise the bravery of those who live with scleroderma (also known as systemic sclerosis), and demand equal treatment and equal care for people with the disease, both across Europe and worldwide.
To continue raising awareness about scleroderma, FESCA is launching the “Find the Light to Bloom” campaign, to shine a light on the unmet needs of people living with scleroderma and urge policy-makers to make improving diagnosis, treatment and the quality of life a priority.
“Find the Light to Bloom” intends to empower the scleroderma patient population and showcase that they can thrive, even though they live with such a disabling disease.
At the same time, our new campaign also seeks to highlight some of the unmet needs of the people living with the disease: recognising that it can take time to be diagnosed or get access to an appropriate treatment plan. But once the patients receive this treatment, they can feel more at ease, and find the light to bloom.
FESCA would really like everyone to get involved in this campaign and learn more about scleroderma: healthcare professionals, patients, families, policy-makers, but also each and every one of those who come across the campaign. You will be truly enlightened by understanding more about it and how it affects people living with scleroderma!
As part of our mission, we are unceasingly calling for equity of treatment and care across Europe and the world for people living with scleroderma. In a new position paper, developed by a group of clinicians and patients and launched on World Scleroderma Day 2022, FESCA presents the patient pathway challenges faced by those living with this debilitating disease.
The position paper, “Undiagnosed and untreated: Realities of Systemic Sclerosis in Europe today” provides unique insights into scleroderma (also known as systemic sclerosis), from the perspective of diagnosis and access to care.
From challenges related to timely diagnosis, through to prevention and treatment, the needs of the scleroderma community remain relatively invisible among the European community of healthcare professionals and policy-makers.
The position paper reveals that there are still great inequalities between and within EU Member States due to the lack of political attention to the needs of the patient community. In this context, our position paper proposes a series of recommendations to address these challenges and create the right conditions to help our community bloom.
Area of Action: Use of patient registries for scleroderma – we need access to standardized patient information and coordination among registries across Europe.
Why: Because data allows the medical community to understand the disease better and countries to implement effective health strategies.
Area of Action: Time to diagnosis – we need accurate and timely diagnosis.
Why: Because timely diagnosis contributes to ensuring that each patient has the best possible quality of life and prognosis.
Area of Action: Referrals to specialised care – in addition to a timely diagnosis, it is crucial to ensure timely referral to a qualified specialist.
Why: Because delayed referrals have a direct impact on quality of care of patients living with scleroderma.
Area of Action: Treatment recommendations – we need countries to adopt clear treatment recommendations, smooth processes and pathways that facilitate access to treatment.
Why: Because better and more equitable access to medicines can improve patient comfort.
Area of Action: Quality of patient information – we need precise, high quality and accessible information.
Why: Because patients must understand their condition, know where to find adequate support and make informed decisions.
Find out more about the unmet needs of the scleroderma patient community and potential solutions to address them.
Our MEP supporters
Our supporters in the European Parliament are committed to improving the policy response to the growing burden of scleroderma in Europe. We are very grateful to them for their support in providing political impetus to improve policy and ensure timely diagnosis, as well as timely access to treatment and care for all people living with scleroderma.
We are committed to making Europe more responsible, more competent, more present in the field of health and, therefore, united in the fight against scleroderma.
To all the scleroderma patients, I would like to tell you how much I appreciate your courage and power to overcome the difficulties that the disease is bringing!
Empowering people with scleroderma through effective healthcare policies is of crucial importance as it contributes to achieving health equity in the EU and its Member States.
A EU Action Plan for Rare Diseases would address health inequalities, and ensure that patients have an equal chance to early diagnosis, innovative treatments and an improved quality of life.
By having access to early diagnosis, personalised treatment plans and patient registries, the scleroderma community can overcome many of the challenges that they are current facing.
Scleroderma has multiple consequences on patients’ health, wellbeing, and quality of life. People living with scleroderma face multiple challenges in everyday life. Here we share some of the stories that highlight what living with scleroderma means and how the different manifestations of the disease influence people’s lives.
Patient living with scleroderma for 16 years. Member of Sklerodermie Selbsthilfe e.V., Germany
Patient living with scleroderma for 7 years. Leader and coordinator of patient group Skleroderma, Revma Liga Česká Republika, Czech Republic
Patient living with scleroderma for 15 years. Member of Reumatiker förbundet, Association for Systemic Sclerosis, Sweden
Patient living with scleroderma for 32 years. President of Associação Portuguesa de Doentes com Esclerodermia, Portugal
FESCA PATIENT SURVEY SOON TO BE RELEASED: LET US HEAR YOUR VOICE!
As part of the Find the Light to Bloom journey, FESCA will officially launch a patient survey in the second half of August 2022.
The objective of this qualitative study is to measure how different countries are performing against criteria related to scleroderma care and management. The survey will collect data from patient organisations from across the globe using a questionnaire developed in collaboration with medical experts and patient representatives.
FESCA encourages all our members to disseminate the survey so that we can hear the voice of patients living with scleroderma.
We want to know more about patients’ experience in getting a diagnosis, receiving medical care, and managing their condition, as well as about the impact this disabling disease has on their lives and the lives of people around them. The survey will be translated into local languages to ensure all patients who want to contribute can do so.
Moreover, the results of the survey will inform a report that will highlight best practices and identify gaps where urgent policy action is needed.
The collected evidence can be used by all of us to support advocacy efforts at European and national level to improve the patient pathway from diagnosis through to disease management and care!
Watch out for the launch of our patient survey!
European Parliament event
To further raise awareness of scleroderma, FESCA will organise an in-person event in the European Parliament on 27 September 2022 that will focus on
Advancing equitable rare disease diagnosis and care: How EU health policy can solve existing challenges
Stakeholders’ reflections on systemic sclerosis
The event aims to bring together public, private and civil society stakeholders to discuss new evidence collected on the gaps and practices in the diagnosis and care of scleroderma, and the opportunities offered by ongoing health-related legislative initiatives in addressing the root-causes of those gaps. Special attention will be dedicated to reviewing Regulation No 141/2000 of the European Parliament and the Council on Orphan Medicinal Products, the Proposal for a Regulation on the European Health Data Space and the Pharmaceutical Strategy for Europe.
The event will be hosted by MEP Patrizia Toia (IT, S&D) with the support of various high-level institutional stakeholders.
Watch out for more information about the event and what we have planned.
Find here all the materials you need to raise awareness and instigate change for people living with scleroderma. Social media posts, posters, banners and more.