#Rare #RareDisease #chronicillness #invisibleillness
25 Secrets of People Who Can’t Work Because of Rare Disease
- We Are the Sisterhood of Mothers With Medically Fragile Children — on The Mighty
- What It’s Like to Be a ‘Medical Trailblazer’ — on The Mighty
Exciting Rare News:
- First Patient Receives Gene Therapy for Rare Liver Disorder— on The Mighty
See the entire list of rare diseases covered on The Mighty here.
themighty.com/topic/rare-disease/
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FibroFlutters continuously
Advocating for a Multi-Disciplinary approach to all aspects of medical healthcare. With a model approach using all the ‘stakeholders’ I’ve designed a patient’s perspective of what patient-centred care, patient-included, patient-involved, patient-centric should look like and involve, that’s everyone by the way!
You all need to pitch in!!
FibroFlutters – Support Group for people with Fibromyalgia, Chronic Pain, EDS/Hypermobility, Mental health, Chronic fatigue/Me, Rare & others offering friendship, support & advice in Sunderland, NE UK and across the globe
Please can you read our Disclaimer & Privacy notes and if you have a problem we are always open to discussion, just e-mail Carole fibroflutters@gmail.com
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