European Sickle Cell Federation

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European Sickle Cell Federation

ESCF is an umbrella organisation for all Sickle Cell patient organisations in Europe.

01/06/2026

It's been a very busy start of the year for us here at the European Sickle Cell Federation as we work towards our new strategic framework for the next 5 years.

With policy and patients first, we understand firsthand the urgent need for education and upskilling of both our member organisations and the community we represent.

Today, we reminisce on such a massive achievement as we celebrate and send our appreciation to everyone who made our first Capacity Building Education and Networking event held in Padova, Italy last month a great success 🙌🏽

Thank you to the head of the medical directorate of Padova University hospital for such a warm welcome and encouraging words of hope for more sessions in the region. We also received a warm welcome speech from the regional coordinator for rare diseases who spoke on the importance of togetherness and collaboration, especially for Sickle Cell Disease within the region and beyond.

Our hearts are full of gratitude to you, Prof Raffaella Colombatti, and Prof. Lucia De Franceschi, for your commitment and support throughout the planning, and through the day.

Thank you, Loris Brunetta and all our speakers, patients, and parents, for making this educational event so impactful and inspirational.

We can not forget to celebrate and thank our ESCF Italian team for their hard work, resilience, and planning. Nkogne, through all the challenges, you remained strong 💪🏽 and committed! We thank you🫂💞

Next stop! Stockholm, Sweden!

06/05/2026

Meet our planning team💝

We are excited for yet another powerful year for our Sickle in View capacity building Sessions 2026, and this time, our first location is Padova, Italy!!

Thank you to our amazing sponsors,

and

03/05/2026

Next month, the European Sickle Cell Federation (ESCF) will be in Padova, Italy, as part of our ongoing Sickle InView capacity building workshops taking place across different countries in Europe.

This workshop, focused on Italy, will bring together patients, parents, carers, clinicians, and policymakers, alongside representatives from the European network, including colleagues from Ireland, the UK, and Austria.

The programme will feature a range of important discussions, including:

- The treatment and management of sickle cell disease
- Mental health challenges faced by people living with sickle cell
- The transition from paediatric to adult care services
- A dedicated Transition Policy Lab, creating space for collaborative thinking and solutions

At ESCF, we remain committed to strengthening the capacity of our member organisations across Europe, supporting knowledge exchange, and driving forward more coordinated, patient-centred approaches to care.

We look forward to meaningful engagement and collaboration in Padova.

📍 More details can be found in the flyer.

23/04/2026

We are delighted to introduce our PLATINUM SPONSOR of our upcoming Capacity Building, Learning and Networking workshops 2026.

Thank you, PFIZER Pharmaceuticals, for your continued support in advancing patient and community awareness and education for

Our first inperson educational workshop is coming up soon.

14/04/2026

Earlier in March, our European Sickle Cell Federation's Patient Engagement and Communications coordinator representing UK and Portugal Ms Miriam Santos Freire represented us at the 52nd Annual EBMT Conference in Madrid, Spain.

Her representation and experience ensured that she is able to acquire educational information on major clinical breakthroughs in treatments and research both ongoing and upcoming, that would be beneficial for the communities we serve in various countries in Europe.

From her feedback, important key questions remained constant:
⭐️ How do we ensure we do not lose sight of the vast majority of patients who are not yet eligible or do not have access to groundbreaking therapies?

⭐️ How do we ensure that patient centricity truly means keeping the patient and human experience central?

⭐️ How do we address the gap between what is possible in some parts of the world and what is available in others?

Her overall experience and feedback have further strengthened our focus and commitment to ensuring patients deserve to be in the room where discussions on issues relative to their health are taking place. This also applies to information design and communication, providing platforms where patients can truly understand the complexity of information shared.

As a patient herself, we are absolutely delighted and appreciative of her commitment to representing other patients and their organisation at such an important annual conference.

17/02/2026

Sickle in View Capacity Building 2026 coming to a city near you very soon!

24/12/2025

Thankful 🤎❤️

30/11/2025

What a fantastic experience!
To our German community! You are simply amazing! What an educational, inspiring, insightful, informative, fun, and friendly session!

🤗You welcomed ESCF with such open arms, full of warmth and love❤️. You were open to learn but most importantly you also shared your deepest hopes and desires for advancement in Germany.

👂We definitely listened, understood, and have taken on board everything shared. We cannot wait to work with you all in unity, power, and togetherness for equitable, inclusive, and effective health care services for patients and families living with Si kle Cell anaemia in Germany and Europe at large.

Thank you president .v.20
and to the board chairman Mr Mudashiru Salvador for all the work put in ensuring the success of the event including the translations.

Thank you Flody Owusu president and president for sharing with us your hopes and dreams for SCD.

💭💫As always, ESCF is grateful to have such a fantastic committed, hardworking, resilient and passionate team. We are thankful to our CEO for her leadership and planning, our assistant project manager, advocate and Communications for her leadership, effective planning, and presentation of the Transition Policy Lab and the initiatives, also giving a lot of her time towards the planning of this workshop.

We are very grateful to our Membership and welfare director Mr Daniel Nyakutsey president for making sure everything goes to plan, and for sharing the vision always✨️🌟

29/11/2025

It's on and going great already as our assistant project manager, patient advocate and Communications Miriam Santos Freire presents the transition from paediatric to adult health care policy lab guidelines.

28/11/2025

Counting hours to our final capacity building workshop for this year 2025!

Definitely looking forward to the German experience as we welcome and learn from our new member organisations led by president Flody Owusu and Thalsifo led by president

Just a few tickets left to join us for a great experience as we gather in unity with one single strong unique voice for in Europe.

To register, click the Eventbrite link in bio.

Adresse

Rheinallee 1
Neuss
41460

Webseite

http://www.escfederation.eu/

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