At an EU Conference in 2013 Kay Parkinson displayed a poster of the many conditions affecting Alström patients. Kay is CEO of CRDN, founder of Alström UK and CEO of Alström Europe and a passionate rare disease advocate. The poster was spotted by chance by the CEO of Prometics who noted that in this syndrome, fibrosis of unknown etiology develops in multiple organs. As a result, after overcoming barriers, they carried out the first UK clinical trial for their PBI-4050 fibrosis treatment. The drug gained EU and US Orphan drug status this year.
We wanted to give other Rare Disease patients and groups the opportunity to have maximum exposure to pharma and biotech companies, trusts and clinicians to share information, talk to each other and ultimately foster collaborations, and so launched our #CRDN2017 Patient Journey Poster callout. Patients, advocacy groups and charities alike have risen admirably to this challenge and we have an outstanding collection of almost 40 Posters and accompanying patient journeys – as time-lines, poems and stories to bring the science alive.
Come and see the exhibition at #CRDN2017 on 23 Oct. Meet the poster creators, learn about rare disease, look for collaborations…….
On display and as part of your delegate handbook to take away you’ll see posters about:-
The full list here:-
Tay Sachs and Sandhoff, Mal de Debarquement Syndrome, Scimitar Syndrome, Ataxia, Charcot Marie Tooth Disease, Familial cold autoinflammatory syndrome type 2, Xeroderma Pigmentosum – XP, Hyper IgD Syndrome (HIDs), Trisomy 13/18, Vasculitis, Leber Hereditary Optic Neuropathy, Lipodystrophy, pemphigus/pemphigoid, Stiff Person Syndrome, Gitelman Syndrome, Complex Regional Pain Syndrome, Pitt Hopkins, Lymphangiomatosis/Gorham Stout Disease, Genetic Overgrowth PIK3 , HSAN1E, Akinetic Crisis in the autosomal dominant LRRK2 (G2019S) Parkinson’s Disease, Alkaptenuria AKU, Blounts Disease, Sotos Syndrome, Aarskog Syndrome, Kawasaki Disease, Ring Chromosome 20 Syndrome, Occipital Horn Syndrome, Wyburn-Mason syndrome, Acromegaly, Wilson Syndrome, CSF Leaks, Bardet-Biedl Syndrome, Duchenne Muscular Dystrophy, hereditary spastic paraplegia with a few more to come…..