aHUS Community Advisory Board News

Two updates on the Global aHUS Community Advisory Board.

There is some information about the inaugural set of CAB / PHARMA meetings in November 2022.

But firstly news about three new board members following the recent call for applications to join the Board . Although there were no applicants from Africa, there were two EU applications and one from South America.

All applicants showed strong family and personal connection to aHUS , motivation to advocate and the skills needed for board working to help aHUS patients everywhere in a formal partnership.

The new board members are :

Christiane Mockenhaupt – Germany

Zofia Lisiecka- Poland

Pamela Notario- Brazil

and each is welcomed to the Board, which now has 15 members from 11 countries. FMI on the aHUS Community Advisory Board, visit the CAB landing page https://bit.ly/GlobalCABaHUS

The following report is provided to keep the global aHUS community aware of the scope of the dialogue between the CAB and Pharma. The intention will be to publish such reports after each programme of meetings.

Report 1.

 The Global aHUS Community Advisory Board (CAB) held its inaugural programme of meetings with three Pharmaceutical  Companies on the 16th, 17th, and 18th November 2022 in Barcelona, Spain (some participants  joined in online). As these were the  first meetings,  time was taken to introduce all participants and set out the  patient centric aims of the Community Advisory Board (CAB) and its way of working.

Main topics  discussed included:

  • Patient safety, including adverse events/side effects reporting and patient reported outcomes.
  • Specific mitigation and interventions around, and patient awareness of , possible Meningococcal Infection, a  very serious side effect from complement inhibitor use.
  • The design and conduct of aHUS clinical trials and the patients’ experience.
  • Unmet needs in patient education and understanding, including awareness of disease triggers.
  • Patient preferences for aHUS treatment administration and its withdrawal when not needed.
  • Company information for aHUS patients in the public domain, including websites.
  • Understanding the aHUS patient’s journey from onset to living with the disease.
  • Status of global aHUS patient advocacy and it relationship to any potential global growth of treatment access.

The second round of meeting are being planned for 1-3 May in Baltimore, USA.

There will be actions arising from these meeting to benefit all patients and which will become visible in time. The CAB is continually scanning for patient insights and concerns. It is why such videos as the one produced for Rare Disease Day 2023 are important and inform the collective patient voice that it aims to give.( The video can be viewed HERE )

More information about the CAB can be seen via the home page portal.

Article No. 567

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