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.

13/06/2026

We are delighted to introduce our SILVER Sponsor

Their continuous support in ensuring our members organisations become stronger advocates for SCD through our capacity building workshops has generated a strong and positive impact for patients, families, and the community stigma large.

We thank you for your support towards this year's Capacity Building.

08/06/2026

Today, we celebrate our very own MIRIAM SANTOS FREIRE for her continuous commitment, strength, courage, and selflessness.

Miriam successfully presented our Bridging Gaps in Rare Disease: A Participatory Policy Lab poster at the recently concluded conference in Prague, which was one of the top 10 posters chosen among 240 submissions.

With Sickle Cell as the case study, this process brought together patients, parents, health care professionals and industry together for one common purpose- bridging the gap by developing a model that would ensure all patients transitioning from paediatric to adult health care services experience a more coordinated, compassionate, smooth and supportive transition of services across Europe.

Over 18 months of meetings, discussions, lived experiences, clinical input, and research went into developing this very valuable, informative policy document that is relevant across all conditions.

With all life's challenges managing sickle cell pain, Miriam successfully delivered an outstanding smooth and calm presentation that left us all amazed at her composure, professionalism, and strict attention to detail.

Living with Sickle Cell requires profound strength, and the journey is always defined by unpredictable pain crisis and daily uncertainties.

They are expected to do so much even when they physically and emotionally cannot due to the sudden changes that may befall them at any given time. And yet, with so much resilience, they are able to do the very best they can.

We are delighted to have had some of our team members there to support her and share words of encouragement.

We applaud you, Miriam Santos Freire, for you love, and commitment to raising awareness of and sacrifices to ensure the next generation receives better opportunities than those given to our current generation.

08/06/2026

This June 19th, we remain committed to highlighting the misconceptions surrounding the racial structure of prevalence in the world.

Our World Sickle Cell Day theme is:

Sickle Cell Has No Colour.....it's in the blood.

Sickle Cell anaemia remains the most common genetic condition in the world. It has no discrimination, racial, gender, ethnic or geographical preferences.

IT IS IN THE BLOOD!!

Join us this year as we raise awareness of the real face and prevalence of Sickle Cell.

06/06/2026

NEXT STOP
STOCKHOLM SWEDEN 🇸🇪

Long awaited for, we are excited to bring to you our upcoming Capacity Building Education and Networking session taking place at Mornington Hotel Bromma, in Stockholm.

Saturday 13th June will be a groundbreaking breaking achievement for our member organisation bringing to you its first major educational session focused on upskilling patients,parents and the community in effective advocacy, and the advancementvof Sickle Cell awareness in the Scandinavian countries.

We look forward to welcoming you to this event.

04/06/2026

Day 1 at Prague 🇨🇿,

Our team was busy. The day was filled with meaningful conversations around our Sickle Cell Transitions Policy Lab poster, with delegates stopping to engage, ask questions, and share their own experiences from across Europe and beyond. The interest and depth of those conversations were more than special.

But beyond the poster, it was the connections we made that stood out most.

ECRD brought together some of the most committed and passionate individuals working in the rare diseases space, patients, researchers, clinicians, policymakers, and advocates, all in one place, unified with the same drive - to change the landscape for the communities we serve.

This is exactly why our work at the European Sickle Cell Federation and involvement as representatives of the Sickle Cell Community in Europe matters. Not just the research, or the policy Charter, but the conversations our engagement at this years opened up, the relationships built, and the doors unlocked for the people living with sickle cell disease every single day.

It was important to be in this space and part of the future of rare disease policy change. Patient experiences may be different across diseases, but our needs, aspirations, and concerns are very much similar and unite us for one common goal and purpose.

SickleCellTransitions ESCF HealthEquity PlasmaOfHope

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.

17/02/2026

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

Adresse

Rheinallee 1
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41460

Webseite

http://www.escfederation.eu/

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