Tweetchat: Raising our voices for AMR and Rare Diseases

In partnership with the Center for Infectious Disease Research and Policy – Antimicrobial Stewardship (CIDRAP-ASP)
we invite you to join us on the 28th of February 2023 to discuss the impact of Antimicrobial Resistance on Rare Diseases.

Joining Details

• Moderator: Francesca Chiara (@CIDRAP) and Vanessa Carter (@theAMRnarrative)
• Date: 28 February 2023
• Where: Twitter
• Time: 4 pm – 5 pm GMT
• Hashtag: #theAMRnarrative
  

How to participate:
Join us for a 60-minute Twitter chat with our panel experts. All stakeholders are welcome.

Start your answers with T1, T2, T3, T4, or CT for transcript purposes.
Answer only after the moderator prompts. Questions will be prompted every 10 minutes but keep answers coming using the relevant T and number. Both panel experts and the public are encouraged to answer.
Use the #theAMRnarrative hashtag in all your tweets so that you are visible to others in the chat and captured on the transcript.

Read more about the event on the CIDRAP website here.

Summary

Individuals with underlying diseases are more susceptible to developing dangerous and potentially life-threatening AMR infections.

For instance, patients with cystic fibrosis are prone to developing chronic upper respiratory tract infections because of the thick mucus that is secreted in the lungs as part of the disease process. Bacteria, including those that are drug-resistant, are more likely to become trapped within this mucus, causing an infection that could be difficult to treat with currently available medicines. Read our patients’ stories here (link).

Additional rare diseases that can be impacted by AMR include Osteomyelitis, Microatia, Thymic Carcinoma and Actinomycosis as well as conditions like craniofacial anomalies, which rely on continuous surgical interventions where antibiotics are prescribed to reduce and manage infections.

Various interventions including Antimicrobial Stewardship, education, and infection control (e.g. hand hygiene), as well as novel treatments like phage therapy, are being utilised to tackle AMR. The WHO describes “Antimicrobial stewardship” as interventions designed to promote the optimal use of antibiotic agents, including drug choice, dosing, route, and duration of administration. It would be important to understand how these can improve patient outcomes in the rare disease community.

Join us for a 60-minute Twitter chat to share your views about the impact of antimicrobial resistance and rare diseases. The chat is primarily for patients, carers, charities, members of the public, and related stakeholders, but we welcome everyone’s views.

Questions:
T1: What is AMR and why could it be a problem for patients affected by rare diseases?
T2: Why are rare disease patients so badly affected by AMR infections?
T3: How might we reduce the incidence of infection or improve treatment options for rare disease patients in relation to AMR?
T4: What is antimicrobial stewardship and how can it support patients with rare diseases?
T5: What interventions do you think could reduce the risk of AMR in clinical settings (e.g. hospitals) for rare disease patients?
CT: Any thoughts you would like to add about the impact of AMR and rare diseases?