These registries, must, out of necessity to the rare disease patient, be a part of a global research network.
Time is a luxury in the life of a rare disease, and particularly so, in the scleroderma, patient.
The 5th Systemic Sclerosis World Congress is to take place in Bordeaux, France, February 15-17 2018.
Read more: Vol 1, Number 1 and Vol 1 Number 2
The expert specialist center provides not only the best patient care, but also, an invaluable opportunity to share coping and management techniques, alleviating a little of the isolation experienced by the rare disease, scleroderma patient.
- Capacity to manage rare disease patients and
provide expert advice; adhere to good practice guidelines for diagnosis and
- Patient access to a
multidisciplinary team of experts (integrating medical, paramedical,
psychological, and social needs)
- Assure quality of care, participation in
internal and external quality schemes, propose quality of care indicators
- Proven expertise documented by annual volume of referrals, second opinions, publications, grants, teaching and training activities
- Participation in research activities, data
collection, clinical trials if applicable
- Organisation of collaborations to assure the
continuity of care between childhood, adolescence and adulthood, if relevant
- Organisation of collaborations to assure the continuity of care between all stages of the disease’
An expert specialist center is at the nucleus of this.
I focussed on the Scleroderma patient Healthcare DreamTeam on Day 30 of Scleroderma Awareness Month 2016 Campaign.
This world class center of expertise, without a doubt, is a global leading light in the scleroderma global research field.
|'My Skin is Cured From Scleroderma' 19 years post diagnosis, Nicola Whitehill, 30.11.16|
An edited version of this article was published here, in my Column with Scleroderma News.
To read my articles:
Rare Disease Day 2018, Research - Taking Part in Clinical Trials, Click here
March Autoimmune Disease Awareness Month 2018, Click here
Global patient video, Click here
Becoming a Patient Research Ambassador for the NIHR, Click here
World Scleroderma Day 29th June 2016, Click here
World Scleroderma Day 29th June 2017, Click here
Why Global Collaboration is important to the Rare Disease Patient, Click here
2016 Rare Disease Day Patient Voice