King’s College London

King’s College London Students for Rare Diseases is a newly established society hoping to continue the work done by other universities. 12% of patients wait over ten years to get a diagnosis, and even with a diagnosis over half of patient families feel uninformed about these conditions. That is why we at KCL feel more must be done to equip students with the tools to speed up these diagnoses. Throughout the year we plan to run lecture series and film showings, to drum up support and recognition for these often missed disorders.

Facebook – www.facebook.com/groups/711545155611812/
Twitter – twitter.com/S4RDKCL
Email – click here

(2) awesome folk have had something to say...

  • Karen Rockell - Reply

    October 29, 2016 at 9:28 am

    Beat SCAD is a patient-led charity that aims to support SCAD patients and their families, raise awareness of SCAD and raise funds for research into the condition. Our mission is threefold: Awareness, Support and Research.
    We want to:
    Raise awareness of SCAD among medical professionals and those who have had a SCAD diagnosis
    Provide support for SCAD patients as well as family and friends
    Raise funds for research

    Awareness
    Many medical professionals only come across SCAD in medical textbooks. We want to increase awareness among care-givers, including GPs, nurses, cardiologists, cardiac rehab teams, paramedics, midwives and more. We also want to increase awareness and understanding of the condition among SCAD patients, their family and friends and the general population. We believe increased awareness will lead to earlier diagnosis and better outcomes for SCAD patients.

    I am a co-founder and trustee of Beat SCAD but i am also a patient of Kings College Hospital. I have 4 rare diseases. Autoimmune Hepatitis, PSC, Coeliac disease and Spontaneous Coronary Artery Dissection.

    I am a trained public speaker and would be happy to talk to your student doctors about rare disease and the impact on patients and their families or specifically about any of the above rare diseases .

    I t is a common fact that most Rare Disease patients are as knowledgeable about the condition as their clinicians. An unfortunate situation but a reality!

    I am very impressed with the Students 4 Rare Diseases project and I hope it spread to all universities. Thank you for your interest.

    Best wishes

    Karen Rockell

    • Laura Curran - Reply

      November 30, 2016 at 2:34 pm

      Thank you Karen for getting in touch! Unfortunately there seems to be a blip in our system and I have only just seen this.
      We are thrilled that you have offered to speak to medical students regarding SCAD. Bizarrely, we have just organised for Dr Adlam to talk on SCAD at our next annual symposium in 2017!
      I will send you an email today.
      Thanks again for your comments and we look forward to hearing your talk at one of our events in the near future.
      Best wishes,
      Students4RareDiseases

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