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

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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

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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

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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

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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)

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February 29 Every year we organize RDD activities in Latvia

Press conferences Interviews Photo exhibition in 2015 Other events

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Photo exhibition 2015

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Media coverage

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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

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Future plans

1. Capacity building

2. Extention of representation

3. Awareness building

4. Patient interest advocacy

5. Ensure operations

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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

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New members We are open to new memberships

Dedicated professionals Professional organizations that deal with RD Patient organizations Patient networks Others..

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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

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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

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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

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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

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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

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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 alianse@retasslimibas.lvwww.retasslimibas.lv