💜First European FA Scientific Meeting being held this week in Paris💜 Over 90 Patient Support Groups from all over Europe, including Fanconi Hope, will be coming together this week to make this first European Scientific meeting for Fanconi Anaemia in Paris possible.

The Chair of Trustees has arrived in Paris and has met with the Patient Support Group Representatives from around Europe prior to the FA conference tomorrow. In order to share experiences of the respective organisations over the last year.

💜The first European FA Scientific meeting is underway in Paris today 💜With the keynote speaker being, Professor Eliane Gluckman who performed the first successful human umbilical cord blood transplant in the 1980s. Genetic Alliance UK Gene People Richard DuBeau Josu de la Fuente

💜Update - European FA Science Meeting💜A very significant photo for FA! This is the most European FA experts and Patient Support Group Representatives ever to gather together. Genetic Alliance Gene People Richard DuBeau Josu de la Fuente

💜Update💜 It’s been an amazing day at the European FA Science Meeting, a true collaboration of voices. With one of the sessions, led by the Italian doctors, discussing bone marrow transplantation. Genetic Alliance UK Gene People Richard DuBeau Josu de la Fuente

Katie is on her way to Edinburgh in preparation for kayaking the Firth of Forth, at the end of the week, Katie has completed the book that her brother, Toby Carr started, ‘Moderate Becoming Good Later’ and has the intention of writing a second book to complete the venture.

💜And the adventure begins💜 Katie has arrived along with the film crew for the start of her kayaking the Firth of Forth. We will keep you updated throughout the day, on how she gets on!

💜Update💜 Katie has met with our Chair of Trustees, Bob, and Claire who will be kayaking with her. Katie's kayak is adorned with 'Fanconi Hope' stickers and they are nearly ready for the off!

💜And they are off💜 Katie Carr, joined by Claire, Dave and Ian from the Lothian Sea Kayak Club, are kayaking the Firth of Forth this afternoon in memory of Katie's brother, Toby Carr. Katie has recently completed writing the book ‘Moderate Becoming Good Later’.

💜The adventurers have returned💜 Katie, Claire, Dave and Ian have returned from their afternoon kayaking around the Firth of Forth #lothianseakayakclub #katiecarr #kayakingthefirth #fanconihope #moderatebecominggoodlater

Katie will be joined on her adventure by Claire, Ian and Dave at the Lothian Sea Kayak Club.

We are pleased to announce that Fanconi Hope, has today been given charitable status in Scotland, by the Scottish Charity Regulator (OSCR). This is an outstanding achievement and a milestone for Fanconi Hope! #scottishcharityregulator #charitystatus #fanconihope

💜Sign up for this week's Webinar💜 We are bringing you this webinar hosted by family therapist Amy Beadle, to think about the challenges of life cycle changes in the context of illness. theaat.org.uk/Event/family-l…

Sick of always having to explain your condition? Join us for a cuppa on Saturday 20th July in Edinburgh, London, Birmingham or Leeds and chat with people who just get it. Support groups and events for people with aplastic anaemia or PNH (theaat.org.uk)

Sick of always having to explain your condition? Join us for a cuppa on Saturday 20th July in Edinburgh, London, Birmingham or Leeds and chat with people who just get it. Support groups and events for people with aplastic anaemia or PNH (theaat.org.uk)

This weekend saw a 2 day meeting where The Better Together for Healthy Bone Marrow Project Team, Community Reference Group members and a number of Trustees came together to discuss the second year of the three year National Lottery-funded programme. Lots achieved and lots to do!

Our first magazine is ready to read and packed with news and stories from people living with Fanconi anaemia: fanconihope.org/fanconi-hope-a… Genetic Alliance UK Gene People PNH Support SDSUKCharity The AAT DBAS UK Josu de la Fuente Sorcha Eastwood MP @CongenitalAnaemia

Our first magazine is ready to read and packed with news and stories from people living with Fanconi anaemia: fanconihope.org/fanconi-hope-a… Manchester Rare Conditions Centre @M4RareDiseases Cambridge Rare Disease Network (CamRARE) Beacon for Rare Diseases

Great to talk to Be More Dexter live on BBC Radio Berkshire and Oxford this morning, on his arrival in Paris for the Paralympics. He is now surging towards his target of £10,000, shared between Fanconi Hope, WheelPower and Sport in Mind . Thank you Dexter!