Latvian Alliance for Rare Diseases A WAY TO BENEFIT FROM COOPERATION: LATVIAN ALLIANCE FOR RARE...
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Transcript of Latvian Alliance for Rare Diseases A WAY TO BENEFIT FROM COOPERATION: LATVIAN ALLIANCE FOR RARE...
Latvian Alliance for Rare Diseases
A WAY TO BENEFIT FROM COOPERATION:
LATVIAN ALLIANCE FOR RARE DISEASES
Baiba Ziemele 22.08.2015.
Latvian Alliance for Rare Diseases 2
Rare diseases Rare diseases are life-threatening, chronically debilitating,
rare and with a high degree of complexity < 5 in 10 000 people 5000 – 8000 diagnoses that affect 6 – 8% of population 80% are genetic conditions, others are rare cancers,
autoimmune diseases, inherited malformations, toxic and infection diseases
75% dg affect children, 30% of them die before age of 5 Apr. 140 thousand people in Latvia may be influenced by
a rare disease at some point of their lives In EU is estimated at between 27 and 36 million people
Latvian Alliance for Rare Diseases 3
5 different NGOs joining forces
ALLIANCE for Rare Diseases
Latvijas Hemofilijas
biedrība
Latvijas Cistiskās fibrozes biedrība
Pulmonālās hipertensijas
biedrībaReto slimību
biedrība CALADRIUS
Motus Vita
Latvian Alliance for Rare Diseases 4
Latvia Hemophilia Society Est. 1993 To unite, protect and advocate for people with bleeding
disorders (hemophilia A&B, von Willebrand disease, other rare factor deficiencies)
Represents apr. 300 patients in Latvia Member of European Hemophilia Consortium Member of World Federation of Hemophilia www.hemofilija.lv
Latvian Alliance for Rare Diseases 5
Latvian Cystic Fibrosis Society Est. 2012 To unite and support people with cystic fibrosis and their
families CF also known as mucoviscidosis Member of European Cystic Fibrosis Association Member of SUSTENTO www.cistiskafibroze.lv
Latvian Alliance for Rare Diseases 6
Pulmonary Hypertension Society Est. 2011 To improve quality of life for people with pulmonary
hypertension and raise public awareness of PH, its diagnostics, therapy and rehabilitation
Member of European Pulmonary Hypertension Association
www.phlatvia.lv
Latvian Alliance for Rare Diseases 7
Rare Disorders Society CALADRIUS Est. 2009 Represents people with various rare diseases and unites
anyone – patients, relatives, friends, professionals, others 20 members, 11 ultra-rare diseases http://www.draugiem.lv/caladrius/
Latvian Alliance for Rare Diseases 8
Motus Vita Est. 2009 To support people with neuromuscular diseases and their
families by providing information and key services Member of International Alliance of ALS/MND
Associations Member of EURORDIS Member of TREAT-NMD Neuromuscular Network Member of SUSTENTO www.motusvita.lv
Latvian Alliance for Rare Diseases 9
Latvian Alliance for Rare Diseases 10
Latvian Alliance for Rare Diseases Established October 3, 2014 Currently unites 5 patient organizations Mission: to foster adequate quality of life for people with
rare and chronic diseases in Latvia Goals:
Involve patient organizations in decision making and implementation of initiatives
Facilitate improvement of health and welfare policy in RD field Represent interests of RD non-profit organizations on national and
international level
Member of EURORDIS www.retasslimibas.lv
Latvian Alliance for Rare Diseases 11
Our vision Rare diseases are diagnosed in timely manner and free of
charge, various competent specialists are available and can prescribe modern, effective and safe treatments,
provide necessary medical and other services, and cooperate with foreign colleagues, but society understands and accepts specifics of rare
diseases and patients and support them when necessary
Latvian Alliance for Rare Diseases 12
Target audiences
12
PATIENTS SPECIALISTS
INSTITUTIONS SOCIETY
FAMILY DOCTORS (GP) MEDICAL SPECIALISTS MEDICAL STAFF PROFESSIONAL
ORGANIZATIONS
CHILDREN, ADULTS SOCIETY AT LARGE INTERNET SOCIETY VOLUNTEERS BENEFACTORS CORPORATIONS, FUNDS OTHER NGOS
PEOPLE WITH RARE DISEASES
THEIR RELATIVES THEIR ANCESTRY AND
PROGENY PATIENT AND DISABLED
PERSON ORGANIZATIONS
EUROPEAN INSTITUTIONS LR PARLIAMENT, GOVERNMENT MINISTRIES (HEALTH,
WELFARE, OTHER) MUNICIPALITY (RIGA,
REGIONAL) AUTHORITIES (NATIONAL
HEALTH SERVICE, MEDICINES AGENCY, OTHERS)
Latvian Alliance for Rare Diseases 13
February 29 Every year we organize RDD activities in Latvia
Press conferences Interviews Photo exhibition in 2015 Other events
Latvian Alliance for Rare Diseases 14
Photo exhibition 2015
Latvian Alliance for Rare Diseases 15
Media coverage
Latvian Alliance for Rare Diseases 16
National RD plan Working group within Ministry of
Health during 2010-2012 Plan 2013-2015 with no budget,
only restructuring and organizational activities
Plan 2016-2019 not yet started due lack of political will
Latvian Alliance for Rare Diseases 17
Future plans
1. Capacity building
2. Extention of representation
3. Awareness building
4. Patient interest advocacy
5. Ensure operations
Latvian Alliance for Rare Diseases 18
Future plans
1. Capacity building1. New members
2. Relations with supporters and donors
3. Learning and sharing experiences
4. Attracting volunteers
5. Developing various projects
2. Extention of representation
3. Awareness building
4. Patient interest advocacy
5. Ensure operations
Latvian Alliance for Rare Diseases 19
New members We are open to new memberships
Dedicated professionals Professional organizations that deal with RD Patient organizations Patient networks Others..
Latvian Alliance for Rare Diseases 20
Future plans
1. Capacity building
2. Extention of representation1. EURORDIS membership
2. Participation in Council of Memorandum
3. Participation in Council of Disabled persons
4. Cooperation with politicians and officials nationally and internationally
5. Cooperation with various organizations and institutions
6. Monitoring field and industry
3. Awareness building
4. Patient interest advocacy
5. Ensure operations
Latvian Alliance for Rare Diseases 21
Future plans
1. Capacity building
2. Extention of representation
3. Awareness building1. Networking with other NGOs and stakeholders
2. RDD events
3. www.retasslimibas.lv
4. Presence in social networks
5. Definition of RARE DISEASES in law
6. Participation in professional conferences
7. EURORDIS conference in Riga
8. Regular PR activities
4. Patient interest advocacy
5. Ensure operations
Latvian Alliance for Rare Diseases 22
Future plans
1. Capacity building
2. Extention of representation
3. Awareness building
4. Patient interest advocacy1. Changes in legislation
2. Participation in working groups
3. Ensuring separate state program for people with RD and 7M EUR annual budget
4. Ensuring 100% reimbursed diagnostics
5. Ensuring 100% reimbursed treatment and rehabilitation
6. Networking event for all people with RD in Latvia
5. Ensure operations
Latvian Alliance for Rare Diseases 23
Future plans
1. Capacity building
2. Extention of representation
3. Awareness building
4. Patient interest advocacy
5. Ensure operations1. Regular meetings
2. Regular communications
3. Corporate identity
4. Accounting management
5. Status of public benefit organization
6. Office work management
Latvian Alliance for Rare Diseases 24
In summary Each of us is special: different backgrounds and experience We face similar problems and aim for similar goals We complement each other Staying motivated and connected is difficult, but crucial There are only 24 hours a day
Latvian Alliance for Rare Diseases 25
VRN 40008228689 Juridiskā adrese: Maskavas 421-18, Rīga, Latvija, LV-1063AS “SEB banka” SWIFT: UNLALV2X IBAN: LV18UNLA0050022527807
Ieva Plūme, Latvijas Reto slimību alianses valdes priekšsēdētāja +371 26720675 [email protected]