Latvian Alliance for Rare Diseases A WAY TO BENEFIT FROM COOPERATION: LATVIAN ALLIANCE FOR RARE DISEASES Baiba Ziemele

Latvian Alliance for Rare Diseases Rare diseases  Rare diseases are life-threatening, chronically debilitating, rare and with a high degree of complexity  < 5 in 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 2

Latvian Alliance for Rare Diseases 5 different NGOs joining forces 3 ALLIANCE for Rare Diseases Latvijas Hemofilijas biedrība Latvijas Cistiskās fibrozes biedrība Pulmonālās hipertensijas biedrība Reto slimību biedrība CALADRIUS Motus Vita

Latvian Alliance for Rare Diseases Latvia Hemophilia Society  Est  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  4

Latvian Alliance for Rare Diseases Latvian Cystic Fibrosis Society  Est  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  5

Latvian Alliance for Rare Diseases Pulmonary Hypertension Society  Est  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  6

Latvian Alliance for Rare Diseases Rare Disorders Society CALADRIUS  Est  Represents people with various rare diseases and unites anyone – patients, relatives, friends, professionals, others  20 members, 11 ultra-rare diseases  7

Latvian Alliance for Rare Diseases Motus Vita  Est  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  8

Latvian Alliance for Rare Diseases 9

 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  10

Latvian Alliance for Rare Diseases 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 11

Latvian Alliance for Rare Diseases 12 Target audiences 12 PATIENTSSPECIALISTSINSTITUTIONSSOCIETY 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  February 29  Every year we organize RDD activities in Latvia  Press conferences  Interviews  Photo exhibition in 2015  Other events 13

Latvian Alliance for Rare Diseases Photo exhibition

Latvian Alliance for Rare Diseases Media coverage 15

Latvian Alliance for Rare Diseases National RD plan  Working group within Ministry of Health during  Plan with no budget, only restructuring and organizational activities  Plan not yet started due lack of political will 16

Latvian Alliance for Rare Diseases Future plans 1. Capacity building 2. Extention of representation 3. Awareness building 4. Patient interest advocacy 5. Ensure operations 17

Latvian Alliance for Rare Diseases Future plans 1. Capacity building 1. 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 18

Latvian Alliance for Rare Diseases New members  We are open to new memberships  Dedicated professionals  Professional organizations that deal with RD  Patient organizations  Patient networks  Others.. 19

Latvian Alliance for Rare Diseases Future plans 1. Capacity building 2. Extention of representation 1. 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 20

Latvian Alliance for Rare Diseases Future plans 1. Capacity building 2. Extention of representation 3. Awareness building 1. Networking with other NGOs and stakeholders 2. RDD events 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 21

Latvian Alliance for Rare Diseases Future plans 1. Capacity building 2. Extention of representation 3. Awareness building 4. Patient interest advocacy 1. 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 22

Latvian Alliance for Rare Diseases Future plans 1. Capacity building 2. Extention of representation 3. Awareness building 4. Patient interest advocacy 5. Ensure operations 1. Regular meetings 2. Regular communications 3. Corporate identity 4. Accounting management 5. Status of public benefit organization 6. Office work management 23

Latvian Alliance for Rare Diseases 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 24

Latvian Alliance for Rare Diseases 25 VRN Juridiskā adrese: Maskavas , Rīga, Latvija, LV-1063 AS “SEB banka” SWIFT: UNLALV2X IBAN: LV18UNLA Ieva Plūme, Latvijas Reto slimību alianses valdes priekšsēdētāja