Exemple

KDIGO Controversies Conference on Complement-Mediated Kidney Diseases
Barcelona, November 19-21, 2015

KDIGO guides are the best known among professionals (doctors and researchers) worldwide. The
organization KDIGO born in USA, invites doctors and researchers, and the most prestigious experts in
each renal disease.

At this conference, we ASHUA have been fortunate to participate with 2 people, and representing
FEDERG and all of European aHUS patients. Due our agenda, Mireya (Secretary of ASHUA) was all
time participating all time on the Treatment Strategies Group, while I was on the second day.

For two full days, doctors and researchers, discussed the questions, detailed below, made by the
other professionals involved in KDIGO worldwide. The findings of the whole debate, we shall know
once drafted the new guidelines for the management of aHUS.

As an organization and representatives of aHUS patients, we have known as health professionals,
their interest in improving the lives of patients, their dedication … but above all, their willingness to
work with us the patients.

We were able to chat and exchange points of views with many Doctors, worldwide, although in the
case of aHUS, perhaps research and good management of aHUS, are concentrated in Europe and
USA.

We highlight several conversations … with Dr. Goodship, which have made possible apart from our
attendance at this Conference, he paid much attention to our comments and concerns,
encouraging us to continue to participate in future KDIGO conferences, representing all kidney
diseases, but also sharing all KDIGO jobs with all patients, in all countries.

Due to technical and medical concepts spoken, I do not feel appropriate to summarize here two full
days of debate among professionals, we shall have it soon, when editing the new guide. Although
all comments between doctors and researchers may I highlight the following:

  • Dr. Ardisino (Italy). A case of cold in a patient with Eculizumab, DO NOT stop the medicine,
    perhaps even increase the dosage.
  • Dr. Ruggenenti (Italy). When a liver transplant is performed at an aHUS patient, Eculizumab is
    strongly recommended during and after transplant until the new liver produces all new
    proteins (especially factor H) in sufficient quantity to avoid new onset aHUS in the following
    days transplantation.
  • Dr. Loirat (France), Dr. Ariceta (Spain) and Dr. Appel (USA). When a debut of aHUS,
    immediately suspected it is aHUS, administer Eculizumab, not loose time, especially in
    paediatric.
  • Dr. Noris (Italy). Genetic analyses help to understand the origin of the aHUS. May it is time to
    start to customized treatments depending of each aHUS patient, but due we don’t know
    much about that, we should take care and learn step by step. We must be careful with the
    Patients.
  • Dr. Blasco (Spain). Patients … associations are the key to request and pressure administrations
    to create reference hospitals and further enhance the investigation, which should be
    centralized and organized.
  • Dr. Van de Kar (Netherlands). She presented the new video made between aHUS patients
    and doctors (coordinated by the association NVN), to raise awareness throughout the
    population, but also to the administration and doctors. We have shown our Personal ASHUA
    bracelet, and she liked a lot and paid special interest in it as she sees many advantages for
    all patients.
  • Dr. Fadi Fakhouri (France). Eculizumab discontinue??? There are cases is completely
    discouraged as the factor H, but for other cases is highly recommended to continue
    treatment for at least one year, and from there continued again between 6 or 12 months
    once the renal function has stabilized. Once discontinued, the patient should be monitored
    very strictly.
  • Dr. Carla Nester (USA). PNH patients take many more years with Eculizumab, so in some cases,
    data can be compared with aHUS cases and learn.
  • Dr. Véronique Frémeaux-Bacchi (France). The visibility of patients is essential, she liked very
    much our ASHUA red bracelet and the campaign we are doing with celebrities.

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Group 5. Treatment Strategies, breakout group questions.

  1. What is the optimal duration for eculizumab treatment in aHUS patients? What is the evidence
    that justifies life-long therapy especially in adults?
  2. What is the evidence for optimal dose and dose interval for eculizumab and are there
    alternatives?
  3. What is the optimal treatment for patients with aHUS due to anti-FH antibodies?
  4. How do we stratify C3G patients for novel agents and clinical trials?
  5. What should the current approach to treatment of C3G be?
  6. Kidney transplantation in aHUS and C3G
    • What is the best time frame for kidney transplantation after the onset of end-stage
      renal disease (ESRD) in aHUS or C3G patients treated with anti- cellular therapy and/or
      eculizumab?
    • What is the risk of recurrence?
    • What is the best strategy in order to prevent aHUS (C3G) recurrence after kidney
      transplantation: preventive vs. pre-emptive strategies?
    • Should living kidney donors be used (preferentially?); living related?
  7. How should eculizumab treatment be monitored: CH50, AP50, free eculizumab or total
    eculizumab, in vitro EC tests?
  8. What is the optimal treatment for rapidly progressive or bad prognosis histology C3G?
  9. What is the role for immunosuppression in the treatment of C3G
  10. What is the role of eculizumab in the treatment of C3G? a. In what subgroups might it be
    useful?

KDIGO

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Exemple

Our federation reached another milestone on 4th April 2014: the act is signed.

acte02_manuella
Photo 1:  Lawyer Mr. Watillon, Manuella Delplanck (AIRG-Belgium), Michel Schenkel (AIRG-Belgium), Secretary FEDERG.

acte06_bruno_michel
Photo 2:  Bruno Woitrin (AIRG-Belgium), Treasury FEDERG, Michel Schenkel (AIRG-Belgium), Secretary FEDERG.

As this initial stage, we have 12 constitutive associations and one associated member, which is by far a real success.

The next steps are:
– The registration of the act and of the proxies. When done, we will have copies of the act.
Submitting the documents for the royal decree to the Minister. When  accepted it will be submitted to the king’s signature.

 

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