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Our vision can be defined as:
“
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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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:
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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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The objectives of FESCA, as the representative of all its member national organizations, are:
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• 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 can:
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• 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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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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 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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Members of the European Parliament
Need to:
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• 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:
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• 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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Specific outlets will include:
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Newspapers
Women’s magazines
Health magazines
Local daily newspapers
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CNN
Newswires
News feeds
The International Herald Tribune
The internet, etc.
For effective communication with the media:
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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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FESCA will provide essential support for national associations by:
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• 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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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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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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• 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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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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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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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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“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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*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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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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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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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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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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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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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
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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