WORLD LYMPHEDEMA PATIENT DAY REPORT 2024

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WORLD LYMPHEDEMA PATIENT DAY REPORT

March 6th 2024
Auditorium Provincial Museum “S.Castromediano” Lecce
Promoted and organized by Section 21 SIMFER
In collaboration with ITALF and SoS Lymphedema.

Every year, March 6 marks World Lymphedema Patient Day, and again this year there have been many awareness-raising initiatives promoted in Italy and around the world by healthcare professionals who deal with this condition and patients who are affected by it

Section 21 SIMFER, in collaboration with ITALF (Italian Lymphoedema Framework) and the SoS Lymphoedema Patient Association, promoted and organized an awareness and information day aimed at patients and their family members who posed questions to the lymphoedema experts in attendance and remotely with video contributions.

The proceedings were preceded by greetings from SIMFER Vice President Andrea Bernetti and Section 21 “Edema” Coordinator Manuela Sciuscio, greetings from local health authorities, ITALF President Sandro Michelini, and SoS National Lymphedema Advisor Domenico Perrone.

Right from the start, the need emerged, emphasized by Michelini, to update and make applicable at the national level and in the individual regional realities, the contents of the “Guidelines for Lymphedema and other diseases related to the lymphatic system” – signed in the State-Regions Conference on September 15, 2016.

Francesco Boccardo, Presidente ESL (European Society of Linfology), advocates the commitment and participation of young people for the scientific growth of pathology “lymphology makes the soul vibrate strongly, like music for Bocelli.”

Francesco Schittulli, LILT President, emphasizes the lymphatic pathology in the cancer patient and with it, the need to plan for the different skills involved in its care, including the figure of the Oncology-focused Psychologist, referring to LILT’s commitment to training through the funding of dedicated Scholarships.

This was followed by videos by Costantino Eretta (member of the SoS Lymphedema Scientific Committee), Tiziana Galli (NIS-Lymphedema AIFI referent), Jean Paul Belgrade (Universitè Libre de Bruxelles), Christine Moffat (ILF International Lymphedema Framework President), Teresa Calandra (President of the National Federation of TSRM-PSTRP Orders) who emphasized the involvement of the different professionals involved in the care of lymphatic pathology first of all the Orthopedic Technician.

At 10 a.m., the panel discussion was kicked off.

Testimonies of good practice, strengths and weaknesses, what future.

Numerous questions were received by the contacts of the patients’ associations and just as many by the patients present in the room to which the lymphologists gave comprehensive and timely answers by resorting to guidelines, consensus documents, scientific literature and current legislation.

This is followed by the broadcast of prerecorded video messages from lymphology liaison colleagues from all over Italy representing the various and diverse experiences of the regions and, overall, showing the panorama of national care provision.

Rounding out the Round Table, talks on the role of nationally prominent Specialty and Health Care figures involved in the management of lymphedema; ranging from the lymphologist clinician to the lymph surgeon, geneticist, physical therapist, and orthopedic technician.

In the afternoon session PROBLEMS AND POSSIBLE SOLUTIONS, we discuss long-standing topics that are still hotly debated:

  • the certification of Rare Disease for Primary Lymphedema, the Regional Registry and the National Registry of Rare Diseases, as well as their intercommunicative possibility:
  • the prescription and reimbursability of the elastocompressive brace according to current regulations, critical issues and futuristic aspects;
  • the role of associations in the drafting of the Guidelines (SoS Lymphedema, Resilia E.T.S., APMARR with their contact persons present on site and ANDOS with pre-recorded video by Ferruccio Savegnago)

At the conclusion of the day, Sandro Michelini outlines future operational proposals for the management of Lymphedema.

Direttivo Sezione 21

Manuela Sciuscio, Pierluigi Zolesio, Sandro Michelini.