FESCA strategic plan - Federation of European Scleroderma

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Strategic Plan

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FESCA Vision

Our vision can be defined as:

A world in which everyone with Scleroderma receives appropriate access to the same level of successful care from fully informed healthcare professionals.”

Our vision is one of a world in which:

 Scleroderma is recognised as an important disease

 Society knows about Scleroderma, and those with the disease do not feel so isolated

 People with Scleroderma have equal access to successful treatments

 Medical practitioners have better knowledge and access to treatments

 Consistent care for SSc is provided across the globe

 Scleroderma becomes a curable disease

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FESCA Mission

The FESCA mission statement:

“To make Scleroderma a well-known disease and, in collaboration with doctors, to secure for those with Scleroderma the best possible treatments, care, and ultimately a cure.”

Our mission will be achieved by:

Becoming the main representative of the EU national organizations

Working with and encouraging the active involvement of politicians and pharmaceutical companies

Working with doctors to secure top treatments, care, and ultimately a cure

Facilitating collaboration among national associations to share ideas and projects

Ultimately we will:

“Educate the world, patients, and doctors about Scleroderma”

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FESCA Objectives

The objectives of FESCA, as the representative of all its member national organizations, are:

• To work with politicians to raise awareness and improve access to appropriate treatment and care

To become a recognized non-governmental organization (NGO) in the EU parliament in Brussels, and to subsequently acquire grants

To raise awareness of Scleroderma throughout the EU

To increase understanding of Scleroderma

To empower people with Scleroderma

To improve access to appropriate treatment and care

To help develop a cure

To encourage the development of, and assist in setting up, national

Scleroderma organizations where none exist

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FESCA Strategy

FESCA can:

• Connect with the medical community and put companies in touch with key opinion leaders (KOLs)

Facilitate access of people with SSc to others through its network of members

• Provide intelligence/market research – with proviso that it must always fully explore ethical considerations

• Lobby and build relationships with politicians to enable their understanding and seek their support

• Promote the goal of rapid access to medical treatment in all member countries, noting different rates of access in member states

• Disseminate news about treatments and care

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Opportunities

World Congress of Scleroderma organized by EUSTAR and North America

Emerging data e.g. that Scleroderma affects approximately 1 in 10,000 people in the UK – amounting to around 500,000

Involvement of EU members --now 11 countries, 14 members

Increased involvement of EULAR with connective tissue diseases (CTDs) such as Scleroderma

Several new treatments in development (e.g. for PAH)

Quality of life studies being conducted; opportunity to highlight the impact of

SSc on quality of life

EULAR-PARE as potential partner

Potential funding from governments

Commitment and dedication of its members

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Threats

 Incidence and prevalence of systemic Scleroderma not known (establishment is one of the aims of EUSTAR)

 Incidence and prevalence of localized Scleroderma not known

 Very few (perhaps 1%) of the talks at EULAR are on Scleroderma

 Little evidence base of effective treatments for Scleroderma

 Low number of people with Scleroderma

 Little interest from pharmaceutical companies due to small size. Market size estimate – 500,000 patients; £20,000 a year per patient drug course  £10 billion a year.

 Low prevalence (or numbers) of people with Scleroderma within musculoskeletal conditions bracket

 Reimbursement issues – protocols that exclude Scleroderma despite the fact that it requires lifelong care.

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FESCA target audiences

Governments/politicians

Media

National organizations

Healthcare professionals

Pharmaceutical companies

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Government/Politicians

Members of the European Parliament

Need to:

• Be educated about Scleroderma as they currently know little about the condition

Know that it afflicts children as well as adults (usually localized)

Know that earlier diagnosis and treatment would reduce the health economic burden

Know that Scleroderma can be life-threatening

Want to:

• Understand the financial impact of the disease on their populations

Know the number of people who have the disease

Be visible for having achieved something – FESCA needs to propose projects e.g. building specialized centers

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Media

Specific outlets will include:

Newspapers

Women’s magazines

Health magazines

Local daily newspapers

CNN

Newswires

News feeds

The International Herald Tribune

The internet, etc.

For effective communication with the media:

A media campaign will be planned by FESCA in collaboration with partners (EULAR, EUSTAR, etc.) to address medical treatments and information about the disease

News should be fresh and new

(scoops) despite having been planned out in advance

Scientific authority should be given

News will be regular

European Scleroderma Day

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National organisations

FESCA will provide essential support for national associations by:

• Providing information, best practice guidance and other support to help them improve their services

Developing a resource for new/fledgling patient associations to ease start-up, including core materials, leaflets about the disease, patient literature, etc.

Establishing authority/credibility on issues relevant to people with

Scleroderma to enable FESCA to issue statements on their behalf across

Europe

• Serving as an authoritative information resource with top medical backup on medications, treatment options, and current research

• Acting as a central communications point within the EU

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Healthcare professionals

Key health professional targets for FESCA include:

• International key opinion leader (KOLs) physicians

• Lead specialists in teams coordinating SSc healthcare e.g. rheumatologists or immunologists

• Collaboration with all KOLs to provide special access to people with

Scleroderma and support in research grant applications

Partnership with key opinion leaders is to involve:

• Helping execution of their research plans

• Providing Epidemiology data – FESCA can facilitate contact to people with

Scleroderma through the FESCA database of National Organizations

• Facilitating access to people with SSc

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Pharmaceuticals: industry leaders and products

Company

Encysive

GSK/Myogen

Wyeth

United Therapeutics

Bayer

Digna Biotech/ISDIN

Actelion

Pfizer

Bosch

Roche

Abbott

Novartis

Schering

Product(s)

Thelin ® (sitaxsentan)

Ambrisentan

®

, Flolan

® for PAH

Enbrel ® etanercept for ankylosing spondylitis

Remodulin

®

(treprostinil sodium) Injection for PAH

Adalat ® (nifedipine) - hypertension, etc.

Ventavis ® – PAH

P144 - topical cream; NAFB001*

Tracleer

®

(bosentan)

– PAH

Revatio ® - (sildenafil citrate) – PAH; Norvasc ® /Istin ® (anlodepine) – hypertension, etc.

Atlin

®

(atenolol)

– hypertension

Caloc ® – (amlodipine besylate) – hypertension

Torem

®

(Torasemide) – hypertension, renal failure, CHF

Neotigason

®

(Acitetrin)

– prescribed to treat severe psoriasis and other skin diseases characterized by thickening and shedding of the skin

Humira

®

(adalimumab )

– inflammation and systemic

Teveten

®

(eprosartan mesylate)

– Angiotension II

Visudyne ® (verteporfin) – eye drop for dry eyes

Ventavis

®

(iloprost)

– PAH

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Pharmaceuticals

The needs of pharmaceutical companies include:

• Need to conduct trials

Need for information (market research)

Need to gain acceptable access to people with Scleroderma through the correct channels

Need to get people with Scleroderma educated about the disease and treatment options (members of FESCA and member associations)

Need for advisers in strategy intelligence

Need for testimonials and case studies

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Comparator strengths and weaknesses

Weaknesses Association

Médecins Sans

Frontières (MSF)

Strengths

30 years

Strong

Media (on TV, bringing aid and help to stricken areas)

Transparent image

Not politicized

Funding (independent individuals, Bill

Gates; Governments)

European Lupus

Erythematosus

Federation (ELEF)

PAH alliance Umbrella group for pulmonary hypertension

One patient on the board

Perceived as a nice gathering once a year with no results

Lost NGO status

Not active

Wanted to go too far outside of Europe

– but there was a split in the board

Lack of cohesion

Lack of focus

Lack of control of their strategic planning

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FESCA strengths

1.

Expertise in Scleroderma – from the patient’s perspective

2.

Capability to meet a healthcare need

3.

Links with professional groups EUSTAR and EULAR-PARE

4.

Status as young, vibrant, umbrella EU organization with links to local associations, professional groups, etc.

5.

Balanced, multidisciplinary leadership from various backgrounds e.g. pharmaceuticals, journalist, etc.

6.

Non-profit organization

7.

Cohesive/coordinated focus

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FESCA weaknesses

1.

Unknown territory for the group

2.

Need for a secretariat

3.

No core funding yet

4.

Limited numbers of known patients

5.

Members are patients with health issues

6.

Members are not all English-speaking

7.

Members cannot meet frequently enough

8.

Not enough Northern and Eastern European representation yet

9.

No website yet

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FESCA position

“For governments, politicians, doctors, the pharmaceutical industry, and the media, FESCA will be the main focal point for all enquiry. As the EU’s only independent, not-for-profit, focused, umbrella patient organization with deep expertise in Scleroderma, FESCA is in a position to achieve this.

Run with the motivation and energy of those whose lives are affected by the disease, FESCA has the support of EUSTAR and EULAR-PARE and disseminates expert knowledge while facilitating communications for all European Connective Tissue Disease stakeholders.

FESCA is a clearing house for patients and the medical community, serving as a conduit for the dissemination of funds in support of research and outreach from a multiplicity of sources. With complete transparency in support of research and outreach, FESCA operates in pursuit of a world in which everyone with Scleroderma receives appropriate access to a comparable standard of successful care.”

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FESCA themes for the next 3 years

2007 – Foundation

2008-2010 – Education of doctors and sufferers, and raising awareness

2009 – EU launch of EU Scleroderma Day*

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*EU Scleroderma Day to evolve into World Scleroderma Day in time

* EU Scleroderma Day to evolve into World

Scleroderma Day in time

2007

FOUNDATION

2008

RAISING AWARENESS

Amongst doctors about living with scleroderma day to day, impact of condition, better early diagnosis

2009

LAUNCH OF EUROPEAN

SCLERODERMA DAY

2010

WORLD CONGRESS OF

SCLERODERMA (ITALY)

Elements

Forming, storming, norming, performing

Set up of FESCA, foundation, vision, mission, objectives, positioning, messages, programmes, funding, organisation, roles and responsibilities

Project 7

Education of doctors for early diagnosis and to raise awareness of holistic approach of treating the whole person in light of day-to-day impact of scleroderma on people ’s lives

Education of people with scleroderma to “live well ” with the condition

Launch of EU Scleroderma Day

World Congress of Scleroderma

(Italy)

EU Scleroderma Day

Projects and programs

A S O N D

E-bulletin/Newsletter

• Strategic Plan (KIM)

- Website (£15k)

- Brochure

– slides (£3k)

- fesca.net.; fesca.eu ( £100)

- Press pack (£3k)

- Invite and set up

• Branding

• Bank account

• Registered NPO

• Board elected

• Letterhead & logo

GCM preparation?

Patient education planning meeting

J F M A J J A S O N D J F M A J J A S O N D

EUSTAR

(Florence) 8k

FESCA Council

Meeting

FESCA presence at

EUSTAR/EULAR with a stand and a leaflet (2000) (including website address) to increase membership and support

Start-up Pack for New national associations

EUSD* Project team, setup and project plan

EULAR (Paris)

EUSD* team meeting

EUSTAR

FESCA Council

Meeting

Nat

Association.

Meeting and members

EULAR (Copenhagen)

European

Scleroder ma Day

(25 June)

EUSTAR decision on EU funding for Project 7

Education Modules

“Survey Service” “Omnibus”

“FESCA” – Data?

• Life

• Cost

• Input

• Society

• Loss

• Interpersonal relationships

• Independence

Funding requirements (

€ ‘000s)

EUSTAR (

€12); Brochure (€4.5);

Website (

€7.5); Press pack (€4.5)

Scientific committee to invite FESCA

- EUSTAR/members

QOL In Scleroderma

Survey (QoLiss)

£50-100K

Strategic plan finalized

Development and distribution to national groups of a local module/blueprint template

FESCA introduction at EU

ATLAS (in collaboration with

EULAR-PARE)

Project 7 EUSTAR Education Module; FESCA involvement in: curriculum development; distribution to national groups

Funding requirements (

€ ‘000s)

EUSTAR (

€12); Start-up pack (€18-23); EULAR stand

(

€2.5); EUSD* set-up (Jan) (€37); EUSD* team (Oct)

(

€44.5); Project 7 (€TBC)

Core materials development (3 months)

Member associations present EUSD* plans

For doctors (National Scleroderma

Association) in clinics for educating patients

- virtual/physical

- Expert patient passing on knowledge

Central

EUSD* event

Funding requirements (

EUSTAR ( materials (

€ ‘000s)

€37); EUSD* (€185.5); Core

€30); March PA plans (€111.5);

J F M A J J A S O N D

World Congress of Scleroderma

(EUSTAR + North America)

-Organizing secretariat

- Scientific committee

FESCA participation at WCS

-Recruit national associations

-Present education modules

-Plenary sessions speeches on impact of scleroderma

Funding requirements (

€ ‘000s)

EUSD* (

€185.5); EUSTAR (€12); Additional supporting activities (

€TBC)

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Project responsibility

Activity

Strategic plan and slides

Website development

Brochure/Press pack

FESCA Leader

Beata Garay Toth

Ann Tyrrell Kennedy

Ann Tyrrell Kennedy

Nele Caeyers

Beata Garay Toth

Ilaria Galetti

Carmela Scarano

E-bulletin/ newsletter

Survey/research

Project 7 modules

EUSTAR/World Congress of Scleroderma

Funding

Funding

EU introduction

Vanda Serras

Beata Garay Toth

Ann Tyrrell Kennedy

Beata Garay Toth

Kim Fligelstone

Kim Fligelstone

Ann Tyrrell Kennedy

Kim Fligelstone

Beata Garay Toth

Vanda Serras

Despo Charalambous

Peter Bakker

Actions

Create, circulate, collate feedback, and prepare for Florence meeting

Design a brief, liaise with web company, decide site map, URL, copy development, circulation of copy

Brief to be prepared

Ann Tyrrell Kennedy to edit final copy

Press pack - ATK to be point of contact

Content to come out of website

Options to be considered

Confirmation from EUSTAR September 07

Confirmation from EUSTAR September 07

Identify and contact the pharmaceutical company marketing managers; use strategic plan and slides to show what is scoped out to secure support and funding/allocation

Project team to be put together

Prepared list of 30 MEPs with interest in healthcare

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Attracting pharmaceuticals

Quality of Life/Impact of Scleroderma Survey:

 Offering market research data from the collation/meta-analysis of completed surveys

 Offering data from quality of life/Impact of Scleroderma Surveys in countries that have not had a recent survey

 Quality of life survey results would highlight the life-threatening nature of the disease, loss of interpersonal relationships, loss of autonomy, impact on employment, etc.

Regular market research:

 Regular market research surveys conducted once a year using an independent company to help prepare the study

E-bulletin/newsletter:

 An e-bulletin or an A3 folded newsletter sent out at 3, 6, or 12 month intervals

 A feature schedule to include disease; politics; drugs; FESCA news; events etc.

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Immediate funding requirements

Project area Budget needs

€12,000

EUSTAR ; flights; accommodation; registration fee; room hire for meeting; etc.

€4,500

Brochure; 6-8 pages; content development; editorial; copy approval; printing and production

€7,500

Website; site map development; content development; design and coding

€4,500

Press pack; content development; design; pack production; distribution

€28,500

TOTAL

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Projected 2008 funding requirements

Project area

EUSTAR; flights; accommodation; registration fee; room hire for meeting; etc.

Budget needs

€12,000

€18-23,000

Start-up pack for new societies; content development; design; pack production; distribution

€2,500 EULAR stand; stand fee; registration fee; leaflet/flyer production

€TBC

Project 7 - Education Modules; FESCA curriculum development; onsite meeting attendance; distribution; dissemination

EU Scleroderma Day* set-up (Jan); meeting to set-up team; travel; accommodation

€37,000

EU Scleroderma Day* team (Oct)

Total

* EU Scleroderma Day to evolve into World Scleroderma Day in time

€44,500

€TBC

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Projected 2009 funding requirements

Project area

EUSTAR (£25k); flights; accommodation; registration fee; room hire for meeting; etc.

Core materials (£20K); content development; copy approval; reiterative review; scientific committee approval; etc.

March PA plans (£75K); meeting for PAs to present plans; flights; accommodation; venue hire; meeting materials and support; moderator; meeting report;

EU Scleroderma Day (£125K); core materials distribution; communications with members; secretariat support; themeing;

TOTAL (£245K)

Budget needs

€37,000

€30,000

€111,500

€185,500

€364,000

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Pro jected 2010 funding requirements

Project area

EUSTAR; flights; accommodation; registration fee; room hire for meeting; etc.

Budget needs

€12,000

EU Scleroderma Day (£125K); core materials distribution; communications with members; secretariat support; themeing;

€185,500

€TBC Additional support activities; brochures, website, meetings, etc. TBC

TOTAL (£TBC) €TBC

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GCM

GPs

KOL

MEP

MSF

NGO

PAH

QoL

RA

WCS

CHF

CNN

CTD

ELEF

EU

EULAR

EULAR-PARE

EUSTAR

FESCA

Glossary of Abbreviations

Congestive Heart Failure

Cable News Network

Connective Tissue Diseases

European Lupus Erythematosus

European Union

European League Against Rheumatism

EULAR-People with Arthritis/Rheumatism in Europe

European Scleroderma Trials and Research Group

Federation of European Scleroderma Associations

General Council Meeting

General Practitioners (family doctors)

Key Opinion Leader

Member of EU Parliament

Médecins Sans Frontières

Non-governmental organization

Pulmonary hypertension

Quality of Life

Rheumatoid Arthritis

World Congress of Scleroderma

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