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RareCareUK, Euroscicon, and Cancer Care Parcel in Partnership

Yesterday Euroscicon Ltd facilitated a partnership between RareCareUK  and Cancer Care Parcel. Rare Care UK is a newly formed initiative to supply care for Rare Diseases when it can’t be found through standard channels. The Charity Chair – Charlene Blake met with staff at Cancer Care Parcel yesterday to set up a collaboration which will enable Rare Care UK to reach its aims much quicker. Jane Geiger and Karolina Dabrowska from Cancer Care Parcel are working hard with their founder Shara Cohen to officially launch Cancer Care Parcel and pledged to give a large proportion of profit to RareCare UK Dr Shara Cohen from Euroscicon Ltd who initiated this meeting (and is a trustee for RareCareUK and founder of Cancer Care Parcel) said “I am very excited about this new partnership which...

Rare Care UK Cinema day

Rare Care UK Cinema Morning – Watching The Secret Life of Pets

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Rare Care website team has created a forum which will be launching in July

Three volunteers, Saskia Zandstra, Honi Pein and Beatrice Avanzato met in March to redesign the Rare Care UK website. Together, they started to develop the website and added a forum in which people suffering with rare diseases will be able to communicate with each other, providing support and advice. “We expect the forum to be up and running by July. It should provide a secure area where people can find the guidance and support which they are looking for and possibly help others in the process.” – Beatrice Avanzato, Rare Care UK Volunteer

Rare Care UK – Inaugral commitee meeting

Rare care UK was officially established on the 17th Nov when the first commitee meeting took place in a cafe in Whetsone, London. Founding members present were Dr Shara Cohen – Charity founder and trustee Charlene Blake – Charity chair Sue Harris – Family Liasion Honi Pein – DOE coordinator Apologies from Linda Bryant- charity trustee The initial emphasis on the meeting was to establish how we would raise funds to acheive all the charities aims

Dr Sarah Lotzof joins the RareCareUK scientific/medical advisory board

Rare Care UK is delighted to announce that Dr Sarah Lotzof, is joining the Scientific/Medical advisory board of RareCareUK. Dr Lotzof founded Chase Lodge Hospital, the first GP-led private hospital in the UK.  She has special interest in Paediatrics The elderly Obstetrics Gynaecology Psychiatry She is a welcome addition to the newly formed scientific/medical advisory board and we aim to use Dr Lotzof’s knowledge of  both business and medcine to further the charity’s aims.

Professor Anthony Weetman will be on the RareCareUK advisory board

RareCareUK is delighted to annnounce that Professor Anthony Weetman (MD DSc FRCP FMedSci) has agreed to join the RareCareUK advisory board. Professor Weetman is Pro-Vice-Chancellor of Medicine, Dentistry and Health, Chair of the Medical Schools Council, Chair of the UK Health Education Advisory Committee and also a Non-Executive Director on the Board of Sheffield Teaching Hospitals Foundation Trust at The University of Sheffield. Dr Shara Cohen, founder for RareCareUK said “I have known Tony for over 30 years and am very excited to have him on board, for the wealth of experience he will bring to the charity”

Bringing Familial Dysautonomia Specialists Together

RareCareUK sponsors Euroscicon Ltd, have created a Dysautonomia session in its Metabolic Diseases Event. This event, which will take place in London on the 20th -22nd September 2016, will provide a unique opportunity for international Familial Dysautonomia experts  (a disease which affects less than 20 people in the UK) to get together and discuss current research and coordination of care. Confirmed Speakers include Professor Horacio Kaufmann, MD FAAN,  Medicine and Pediatrics. Axelrod Chair for Dysautonomia Research,  New York University School of Medicine, NY, USA Mrs Rosalee Gefen, The Zinman College of Physical Education & Sport Sciences, Wingate Institute, Netaney, Israel Dr Su Laurent, Consultant Paediatrician, The Royal Free Hospital, London, UK Dr Robin Lachmann, National Hospi...

RareCareUK founder meets with Cambridge Professor Timothy Cox

At the end of July Dr Shara Cohen, the founder of RareCareUK met with Professor Timothy Cox to discuss launching RareCareUK Professor Cox has a long-standing research interest in the rare diseases. His laboratory is currently developing gene therapy for serious neurodegenerative disorders, including Tay-Sachs and Sandhoff diseases and plays a major role in researching the causes of, and developing treatments for, Krabbes disease and Gaucher disease. In addition Professor Cox, and his group in Cambridge have well-established links with charities and Government-sponsored bodies, which can help bring laboratory work to patients who need to benefit from the research. Dr Shara Cohen said “We hope that RareCareUK will have a long and rewarding relationship with Professor Cox and thank him ...

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