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.

01/08/2026

Recap from our representation at the Sickle Cell and Thalassaemia Ireland Sickle Cell & Thalassaemia Ireland charity gala, which took place in Dublin Ireland last month.

It was an amazing and inspiring event as shared lived experiences of living with SCD through the campaign led by Swedish member organisation President Nedda and an impactful lesson from a lived experience shared by our German member organisation president for IST e.V. Elyz Elvie

Thank you to all our members representing various organisations in Europe, John Lawal Aghate Wakunga Marie-Claire Kofi Sickle Cell Welfare Forum.

Collaboration, representation, networking, and community engagement are key to the success of our advocacy.

18/07/2026

Our first phase of the Sickle in View Capacity Building Workshops is complete. We are thankful for the support and sponsorship from our industry partners on this very important and groundbreaking annual initiative.

Thanks to our platinun sponsor , our gold sponsor , and our bronze sponsor

We are currently working on the next phase for the second half of the year as we prepare workshop sessions to take place in various countries in Europe.

27/06/2026

Ending the month of June with gratitude and accomplishment. We are grateful for the ability to have achieved what we set out to do. We are grateful to our special guest speaker, Prof Peter Pritakis, for such an amazing session on Sickle Cell Disease in Sweden. Very informative and very encouraging 👍🏾 💪🏽🙌🏽

We extend our appreciation to our member organisation now known as Sickle Cell Association Sweden (ScAS) President Ms Nedda Al-ammar who bravely led and organised the ESCF Sickle in View Capacity Building Sweden with the support of Ms Marie Claire Kofi President of our member organisation

Thank you to all our members and the community who joined this session most especially our members and leaders Ms Elvie Ingoli President of .v.20 and Ms Maryanne Saunier Vice President for sharing their inspiring lived experiences of going through Bone Marrow Transplants for Sickle Cell at different stages of their lives. Sharing with us the challenges, uncertainty, hopes, and mental health difficulties that come with going through such a life changing treatment.

Their stories left a huge mark in our lives, gave us hope, and a renewed desire to keep up the fight for Sickle Cell patients all over Europe and worldwide. It further highlighted why unity, partnership, and collaboration in advocating for Sickle Cell is important, especially now when the prevalence is rising rapidly and more babies are born every day.

We would not be able to do this work without the support from our sponsors and

Your support has made a huge difference as we continue to improve and upskill our members in effective advocacy, leadership and governance, confidence building, community engagement, policy awareness, and much more.

Thank you to all those who support us behind the scenes, the visible and invisible. We are also grateful for those who push us in other ways, both positive and negative.

We remain committed to improving the lives of people living with in Europe!✨️💫

25/06/2026

Introducing our Sickle in View Capacity Building Gold Sponsor

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

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Rheinallee 1
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41460

Webseite

http://www.escfederation.eu/

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