2nd European Meeting - Amyloidosis Alliance · AmyloidosisAlliance §Main features Ø Name :...

www.amyloidosisalliance.org

Berlin Congress – September 2 & 3, 2019

2ndEuropean Meeting

forATTR amyloidosis

for doctors and patients

Quality of life of patients

§ What determines quality of life?Major conclusions from surveys on ‘burden’ of the disease

1. Physical health – appropriate medical service = CRUCIAL

2. Emotional wellbeing

3. Social/family relationships

4. Financial wellbeing

5. Work / Professional life

2 September 2 & 3 , 2019

Cure and care

§ Towards an integral service modelØ Each patient has different needs- can we customize our services ?

Ø Which institutions should provide / can provide what kind of

service ? • The Amyloidosis Expert Centre :

• Medical, paramedical and educational services• The Patient Organization (PO)

• Supporting educational and information services, • Advocacy

• Private and public Institutions to whom reference can be made I.e. direction indicators on ‘where to go’ for getting the support or service which the Amyloidosis expert centre or PO can not (fully) provide, eg. advice on financial, legal, insurance matters; free of charge access to technical aids for disabled persons , etc.

3 September 2 & 3 , 2019

Cure and care

§ Toward an integral service model

STATEMENT

EACH EXPERTISE CENTRE SHOULD HAVE A PERSON

TO TAKE CARE OF CARE

Educational nurse; psychologist….who has time for the patient

Ø

4 September 2 & 3 , 2019

Research and clinical trials

§ Do we need a Task Force?YES ! Because

Ø Clinical trials are organised in a way which take specific interests

and wishes of patients not (or insufficiemtly) into account

Ø Are there ways to cut down costs and time lines?

Ø There are research topics which from a patient perspective

deserve special attention

5 September 2 & 3 , 2019

Research topics

§ What determines quality of life?At presentØ Emphasies on studies organised as Clinical trials

Ø Costs borne by the Industry to test the efficacy and safety of

(new) medicines

Very important but there are other topics

6 September 2 & 3 , 2019

Other research topics

§ Food and life styleCan specific diets

Ø Delay the onset the progression of the disease ?

Ø Or have an impact on the burden of symptoms ?

§ Eye defectsØ How to prevent eye defects as a result of Amyloidosis?

Ø How to treat and live with visual impairments if they occurr?

§ Other topics……7 September 2 & 3 , 2019

Connections …

… between patients organized in POsØ “You are not alone” in your RARE disease.

Ø On patient info days : Meet other patients , - caregivers- families

Ø Exchange on how to cope with the disease and related problems

Ø Getting information

• on the disease,

• on ongoing and planned studies and trials

• new treatments and medicines,

• on where to go for which medical or non-medical service

Ø All-in close cooperation and consultation with medical advisors !!8 September 2 & 3 , 2019

Connections …

… between patients organized in POsInstruments and tools of communicationØ Patient info days ( growing numbers of attendance)

Ø PO website + links to other websites- Newsletter ( in paper

and/or on website.

Ø Illustrated booklet on Amyloidis

Ø Social media

9 September 2 & 3 , 2019

Connections …

… with POs can be helpful for doctors !Ø On Patient info days : patients and caretakers get to know their

doctors better

Ø Doctors deal with patients who are better informed and

educated facilitating treatement and its impact

Ø Facilitates family members willingness to be tested for

hereditary ATTR

10 September 2 & 3 , 2019

Connections …

… with POs can be helpful for doctors !Ø Patients being better informed about trials : facilitates enrollment

and retention of patients for trials . compassionate use and

retention for ‘open label’ studies

Ø Patients less tempted to go to websites providing misguiding or

not relevant information

Ø Patients know better where to go for medical and non-medical

services

Ø Result: doctors and patients > all more happy

11 September 2 & 3 , 2019

Amyloidosis Alliance

§ Main featuresØ Name : AMYLOIDOSIS ALLIANCE The Voice of PatientsØ Non profit organisationØ Association of patients’ non-profit organisationsØ Headquarters located in MARSEILLE (FRANCE).Ø Unlimited durationØ Created on June 18, 2018 by three European founding members

§ the Association Française contre l’Amylose (AFCA) – France§ the Stichting Amyloïdose Nederland (SAN) – the Netherlands,§ the Associazione Italiana Amiloidosi Familiare Onlus (FAMY) – Italy

Ø Registered on July 9, 2018 July 9; published July 21, 2018

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§ Standard membersØ Brazil – ABPARØ France – AFCAØ Germany – FAP-eVØ Israel – Amyloidosis Israel.orgØ Italy – fAMYØ The Netherlands – SANØ Sweden – FaMY NorbottenØ USA – Amyloidosis Support Groups

§ Associate memberØ Spain (Balearic Islands) – ABEAØ Venezuela – FAP Venezuela

September 2, 2019


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§ Associated patients GroupsØ AustraliaØ South Korea - newly created organization, evolution to considerØ Spain (national) - Amilo

§ CandidatesØ Canada - Canadian Amyloidosis Support NetworkØ Canada – Hereditary Amyloidosis CanadaØ Mexico – FFAMØ New Zealand - New Zealand ATTR Amyloidosis Patients AssociationØ UK – ATTR Amyloidosis Patient Organisations

September 2, 2019


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§ The BoardØ Jean Christophe Fidalgo PresidentØ Giovanni d’Alessio TreasurerØ Koenraad Verhagen Secretary

+

Ø Françoise Pelcot Support (not in the board)

September 2, 2019


§ Objectives and priorities1. Awareness - Diagnosis

2. Treatment and Care

3. Research

4. Communication and mutual support between POs

5. Advocacy at International level

6. Support other countries in initiating patients group

An international agenda to serve its ( associate) members and serve their interests



§ Task ForcesCreated during the Paris September 15th, 20181. Organisation, every two years, of a ATTR International ‘Doctors

and Patients Congress’ – First focus = Berlin meeting!2. Website Alliance3. ATTR medication available/not-available and accessible in which

countries ?4. Awareness and Diagnosis 5. Standard for Cure and Care (planned)6. Research and Trials (planned)7. Advocacy (planned)8. AL Amyloidosis


Seeking cooperation with all parties in the field And, where possible, bringing them together

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2nd European Meeting - Amyloidosis Alliance · AmyloidosisAlliance §Main features Ø Name :...

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