Rare Disease Day – Fanconi Hope’s Contribution

Collectively, rare diseases are not rare at all!  1 in 20 people will live with a rare disease at some point in their life.

Rare Disease Day takes place annually on the last day of February, with the main objective being to raise awareness about rare diseases and their impact on patients’ lives. The campaign targets primarily the general public and also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.

Fanconi Hope has been active in several activities centred around Rare Disease Day.

Alert Cards for Rare Disease Patients

In January 2018, NHS England committed to require providers of specialised services to give every patient with a rare disease an alert card. This alert card would include information about the patient’s rare disease, any particular aspects of the treatment of their rare disease that needs to be taken into account in providing care to that patient, and details of how to contact an individual expert in that patient’s care. Medical alerts have the potential to improve care and treatment and save lives in emergency situations. However, two years on from this commitment from NHS England little has happened. Fanconi Hope helped Genetic Alliance prepare a report to remind NHS England of its commitment to implement alert cards for rare disease patients, represent the patient experience of using alert cards, and to examine what might work well with the form of an alert card. You can read the full report here.

Members of the Fanconi Hope team attended the launch of this report at a Houses of Parliament Reception on Feb 26th.  In the picture, Dr Jayne Spink, CEO Genetic Alliance UK, presents the report to Dr Jenny Harries, the Deputy Chief Medical Officer.

Fanconi Hope has also been working with the Specialised Healthcare Alliance on a briefing note to Government relating to UK Rare Disease Charities and you may also see our name as a signatory in an open letter to be published on Fri 28th Feb. More about these when they are both published!

 

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