Transcript 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
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
 Newswires
 News should be fresh and new
 News feeds
(scoops) despite having been
planned out in advance
 The International Herald Tribune
 The internet, etc.
 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
Product(s)
Encysive
Thelin® (sitaxsentan)
GSK/Myogen
Ambrisentan® , Flolan® for PAH
Wyeth
Enbrel® etanercept for ankylosing spondylitis
United Therapeutics
Remodulin® (treprostinil sodium) Injection for PAH
Bayer
Adalat® (nifedipine) - hypertension, etc.
Ventavis® – PAH
Digna Biotech/ISDIN
P144 - topical cream; NAFB001*
Actelion
Tracleer® (bosentan) – PAH
Pfizer
Revatio® - (sildenafil citrate) – PAH; Norvasc®/Istin® (anlodepine) – hypertension, etc.
Bosch
Atlin® (atenolol) – hypertension
Caloc® – (amlodipine besylate) – hypertension
Roche
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
Abbott
Humira® (adalimumab ) – inflammation and systemic
Teveten® (eprosartan mesylate) – Angiotension II
Novartis
Visudyne® (verteporfin) – eye drop for dry eyes
Schering
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
Association
Strengths
Médecins Sans
Frontières (MSF)
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
Weaknesses
One patient on the board
Perceived as a nice gathering once a
year with no results
Lost NGO status
Not active
Umbrella group for pulmonary
hypertension
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*
*EU Scleroderma Day to evolve into World Scleroderma Day in time
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* EU Scleroderma Day to
evolve into World
Scleroderma Day in time
2008
2007
2009
2010
Programs, activities and initiatives
Cornerstone
themes
RAISING AWARENESS
Amongst doctors about living with scleroderma
day to day, impact of condition, better early
diagnosis
FOUNDATION
Elements
LAUNCH OF EUROPEAN
SCLERODERMA DAY
WORLD CONGRESS OF
SCLERODERMA (ITALY)
Launch of EU Scleroderma Day
World Congress of Scleroderma
(Italy)
Project 7
Forming, storming, norming, performing
Set up of FESCA, foundation, vision, mission,
objectives, positioning, messages,
programmes, funding, organisation, roles and
responsibilities
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
EU Scleroderma Day
Education of people with scleroderma to “live
well” with the condition
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Projects and
programs
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
Patient
education
planning
meeting
EUSTAR decision on EU
funding for Project 7
Education Modules
Scientific committee
to invite FESCA
- EUSTAR/members
“Survey Service” “Omnibus”
“FESCA” – Data?
• Life
• Cost
• Input
• Society
• Loss
• Interpersonal relationships
• Independence
GCM
preparation?
J
F
M
EUSTAR
(Florence) 8k
FESCA Council
Meeting
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J
J
A
S
O
N
D
FESCA presence at
EUSTAR/EULAR with a stand and a
leaflet (2000) (including website
address) to increase membership
and support
EULAR (Paris)
Start-up Pack for New
national associations
QOL In Scleroderma
Survey (QoLiss)
Funding requirements (€ ‘000s)
EUSTAR (€12); Brochure (€4.5);
Website (€7.5); Press pack (€4.5)
£50-100K
Strategic plan
finalized
EUSD* Project team, setup and project plan
J F M A J J A S O N D
EUSTAR
EULAR (Copenhagen)
FESCA Council
Meeting
Nat
Association.
Meeting and
members
European
Scleroder
ma Day
(25 June)
EUSD* team
meeting
Core materials
development (3
months)
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)
J F M A J J A S O N D
Member
associations
present EUSD*
plans
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
Central
EUSD*
event
For doctors (National Scleroderma
Association) in clinics for educating
patients
- virtual/physical
- Expert patient passing on knowledge
Funding requirements (€ ‘000s)
EUSTAR (€37); EUSD* (€185.5); Core
materials (€30); March PA plans (€111.5);
Funding requirements (€ ‘000s)
EUSD* (€185.5); EUSTAR (€12); Additional
supporting activities (€TBC)
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Project responsibility
Activity
FESCA Leader
Actions
Strategic plan and slides
Beata Garay Toth
Ann Tyrrell Kennedy
Create, circulate, collate feedback, and
prepare for Florence meeting
Website development
Ann Tyrrell Kennedy
Nele Caeyers
Beata Garay Toth
Design a brief, liaise with web company,
decide site map, URL, copy development,
circulation of copy
Brochure/Press pack
Ilaria Galetti
Carmela Scarano
Brief to be prepared
Ann Tyrrell Kennedy to edit final copy
Press pack - ATK to be point of contact
E-bulletin/
newsletter
Vanda Serras
Beata Garay Toth
Ann Tyrrell Kennedy
Content to come out of website
Survey/research
Beata Garay Toth
Options to be considered
Project 7 modules
Kim Fligelstone
Confirmation from EUSTAR September 07
EUSTAR/World Congress of Scleroderma
Kim Fligelstone
Confirmation from EUSTAR September 07
Funding
Ann Tyrrell Kennedy
Kim Fligelstone
Beata Garay Toth
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
Funding
Vanda Serras
Despo Charalambous
Project team to be put together
EU introduction
Peter Bakker
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
EUSTAR; flights; accommodation; registration
fee; room hire for meeting; etc.
Budget needs
€12,000
Brochure; 6-8 pages; content development;
editorial; copy approval; printing and production
€4,500
Website; site map development; content
development; design and coding
€7,500
Press pack; content development; design; pack
production; distribution
€4,500
TOTAL
€28,500
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Projected 2008 funding requirements
Project area
Budget needs
EUSTAR; flights; accommodation; registration fee;
room hire for meeting; etc.
€12,000
Start-up pack for new societies; content
development; design; pack production; distribution
€18-23,000
EULAR stand; stand fee; registration fee; leaflet/flyer
production
€2,500
Project 7 - Education Modules; FESCA curriculum
development; onsite meeting attendance; distribution;
dissemination
€TBC
EU Scleroderma Day* set-up (Jan); meeting to set-up
team; travel; accommodation
€37,000
EU Scleroderma Day* team (Oct)
€44,500
Total
* EU Scleroderma Day to evolve into World Scleroderma Day in time
€TBC
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Projected 2009 funding requirements
Project area
Budget needs
EUSTAR (£25k); flights; accommodation;
registration fee; room hire for meeting; etc.
€37,000
Core materials (£20K); content development;
copy approval; reiterative review; scientific
committee approval; etc.
€30,000
March PA plans (£75K); meeting for PAs to
present plans; flights; accommodation; venue
hire; meeting materials and support; moderator;
meeting report;
€111,500
EU Scleroderma Day (£125K); core materials
distribution; communications with members;
secretariat support; themeing;
€185,500
TOTAL (£245K)
€364,000
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Projected 2010 funding requirements
Project area
Budget needs
EUSTAR; flights; accommodation; registration
fee; room hire for meeting; etc.
€12,000
EU Scleroderma Day (£125K); core materials
distribution; communications with members;
secretariat support; themeing;
€185,500
Additional support activities; brochures,
website, meetings, etc. TBC
€TBC
TOTAL (£TBC)
€TBC
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Glossary of Abbreviations
CHF
Congestive Heart Failure
CNN
Cable News Network
CTD
Connective Tissue Diseases
ELEF
European Lupus Erythematosus
EU
European Union
EULAR
European League Against Rheumatism
EULAR-PARE
EULAR-People with Arthritis/Rheumatism in Europe
EUSTAR
European Scleroderma Trials and Research Group
FESCA
Federation of European Scleroderma Associations
GCM
General Council Meeting
GPs
General Practitioners (family doctors)
KOL
Key Opinion Leader
MEP
Member of EU Parliament
MSF
Médecins Sans Frontières
NGO
Non-governmental organization
PAH
Pulmonary hypertension
QoL
Quality of Life
RA
Rheumatoid Arthritis
WCS
World Congress of Scleroderma
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