Rare Neurology – a Call to Action!

Rare Neurology – a Call to Action!

The Rare Neurology Charter

In Europe, 30 million people are directly affected by rare diseases.

The majority of rare diseases have neurological manifestations, involving central, peripheral nerve and muscle. Most rare diseases are associated with high unmet needs due to the lack of available and effective diagnosis and treatment measures. There is a relative lack of research to develop such measures, at least partly due to the low number of medical experts available for each condition and limited financial resources.

From a lack of available specialists to be able to give a timely and accurate diagnosis, to fragmented care pathways, there are too many gaps in healthcare systems for people living with a rare neurological disease to fall through.

For these reasons EFNA has led a multi-stakeholder group in developing the Rare Neurology Charter. The Charter outlines high-impact policy solutions with the potential to transform the lives of patients.  Building multi-stakeholder support for the identified policy solutions creates a strong platform to address and engage European and national policymakers on an action plan to transform the lives of patients.

Please sign our Call to Action for Rare Neurology to show your support for the Charter and its recommendations. The Call to Action will be used to encourage engagement from policymakers ahead of Rare Disease Day 2025, through the MEP Interest Group on Brain Health and Neurological Conditions.

Click here to access the Rare Neurology Charter or read the Charter recommendations below.

Charter recommendations:

  1. More funding to support rare neurological disease research
  2. Promotion of the importance of natural history studies for those living with rare neurological conditions
  3. A multidisciplinary approach to rare neurological diseases
  4. A holistic appreciation of the impact on those living with a rare neurological disease, their caregivers, and their families
  5. The patient perspective and lived experience should be incorporated into decision-making, system design, treatment, and care delivery
  6. An empowered patient community – one voice for rare neurological disease
  7. Greater public awareness for rare neurology, and neurology more generally
  8. Health systems need to adopt new approaches to support HCPs in better managing rare neurological disease activity
  9. Recognise the value of precision medicine and precision care
  10. Orphan drug legislation to be optimised for rare neurological diseases
  11. Improving disability assessments
  12. Leverage the European Health Data Space
  13. Realise the potential of the revision of the EU pharmaceutical strategy

Call to Action:
Your support matters!

Sign below to show your support for the development of rare neurology action plans at EU-level which will aid the expanding policy change across the rare neurological disease area:

Name:
(Leave blank if you prefer to remain anonymous.)
Your consent:

Signatories:

ORGANISATIONS

  1. ADHD-Europe
  2. Dystonia Europe
  3. European Alliance of Neuromuscular Disorders Associations (EAMDA)
  4. European Alliance for Restless Legs Syndrome (EARLS)
  5. European Charcot-Marie-Tooth Foundation (ECMTF)
  6. European Migraine and Headache Alliance (EMHA)
  7. European Patient Organisation for Dysimmune & Inflammatory Neuropathies (EPODIN)
  8. Euro-ataxia
  9. European Huntington Association
  10. European ME Alliance
  11. European Multiple Sclerosis Platform (EMSP)
  12. European Polio Union
  13. Parkinson’s Europe
  14. European Myasthenia Gravis Association (EuMGA)
  15. International Bureau for Epilepsy (IBE)
  16. International Brain Tumour Alliance (IBTA)
  17. Neurological Alliance of Ireland (NAI)
  18. The Neurological Alliance (England)
  19. Pain Alliance Europe
  20. Retina International
  21. Stroke Alliance for Europe (SAFE)
  22. Tics and Tourettes Across the Globe (TTAG)
  23. Cavernoma Ireland
  24. Werkgroep Hersentumoren vzw
  25. Brain & Spine Foundation
  26. Latvian Multiple Sclerosis Association
  27. Dansk Multipel Sclerose Center
  28. Polish Huntington’s Disease Association
  29. Axolotls
  30. MiGRA Portugal
  31. European Huntington Association
  32. Selcuk Uni
  33. Acovastta
  34. Dystonia Belgium
  35. The Lancet Neurology
  36. Neurological Alliance of Scotland
  37. EOPD.ie
  38. IGAP Awareness
  39. Auth (Greece)
  40. HARSO ry (Finland)
  41. Alexion Pharmaceuticals, Inc.
  42. European Brain Council
  43. Polio-France
  44. SCN2A Georgian Association
  45. European Reference Network for Rare Neurological Diseases (ERN-RND)
  46. University of Bari Aldo Moro
  47. Polio Survivors Ireland
  48. Action for Mal de Debarquement Syndrome UK
  49. Ligue Huntington Francophone Belge LHFB
  50. Persoana fizica (Romania)
  51. Vilnius University Hospital Santaros Klinikos (Lithuania)
  52. Institute of Psychiatry and Neurolog, Poland
  53. Dansk Dystoniforening (Denmark)
  54. University General Hospital of Alexandroupolis (Greece)
  55. KAUH (Saudi Arabia)
  56. RWTH Aache (Germany)
  57. Stopp hsp (austria)
  58. Ghent University Hospital (Belgium)
  59. EPE-Euskadiko Polio Elkartea (Spain)
  60. Federación Polio España (Spain)
  61. Mesa Afectados de Polio y Síndrome Post Polio España (MAPPE) (Spain)
  62. Asociación Cordobesa de Polio y Postpolio- ACOPYPOS (Spain)
  63. EPE-Euskadiko Polio Elkartea (Spain / Basque Country)
  64. San Martino Research Hospital (Italy)

INDIVIDUALS

  1. Lia Le Roy, Belgium
  2. Ingolf Pernice, Germany
  3. Anon, United Kingdom
  4. Marc Smith, United Kingdom
  5. Malinda Magyari, Denmark
  6. Gerry Dieleman, Belgium
  7. Danuta Lis, Poland
  8. Richard Ballerand, United Kingdom
  9. David Oliver, United Kingdom
  10. Filipa Júlio, Portugal
  11. Serefnur Ozturk, Turkey
  12. Roxana Antonia Apollonio Cabrera, Spain
  13. Elena Becker Barroso, United Kingdom
  14. Anja Minheere, Netherlands
  15. Saija Ristolainen-Kotimäki, Finland
  16. Mary Troup, Scotland
  17. Joe Condon, Ireland
  18. Patricia Moghames, Belgium
  19. Elizabeth Cunningham, Ireland
  20. Gresham Africa, South Africa
  21. Maria Gavriilaki, Greece
  22. Elisabeth Kasilingham, Belgium
  23. Irena Juruk, North Macedonia
  24. Adrian, Kielhorn, USA
  25. Katri Asikainen, Finland
  26. Libby Novle, Australia
  27. Paulina Piio, Switzerland
  28. Kirsi Asula, Finland
  29. Sonia Chatin, France
  30. Zhana Chokheli, Georgia
  31. Grace Marie Bricalli, Sweden
  32. Nathalie Chytiris, France
  33. Helen Meinild, Denmark
  34. Ricardo Zavala-Yoe, Mexico
  35. Holm Graessner, Germany
  36. Marianna Delussi, Italy
  37. Fran Brennan, Ireland
  38. Polly Moyer, UK
  39. Maya Uccheddu, Italy
  40. Albert Counet, Belgium
  41. Luisa Enculesei, Romania
  42. Birute Tumiene, Lithuania
  43. Swati Banerjee, France
  44. Pia Vejle, Denmark
  45. Maria Gogou, Greece
  46. Ana Maria Dobri, Romania
  47. Anas Alyazidi, Saudi Arabia
  48. Nelson Ribeiro Borges, Portugal
  49. Melena Kyriaco, France
  50. Louisa Enculesei, Romania
  51. Anna Sofia Costa, Germany
  52. Chrissie Granger, UK
  53. Dmitru Hemelsoet, Belgium
  54. Macrina Clancy, Ireland
  55. MArio Feijóo, Spain
  56. Concepción García-Antón, Spain
  57. Anabel Sánchez, Spain
  58. Ángel Algaba, Spain
  59. Chee Yean Wong, The Netherlands
  60. Michele Messmer, Italy