Where do you see yourself in 🔟 years?

Nearly half of people living with a rare disease hope to successfully manage the symptoms of their disease, even if they are progressing.

Learn more! ℹ️ https://www.eurordis.org/publication/future-rare-diseases-leaving-no-one-behind

The @EU_Commission's decision to abandon the operating grant in the 2021 Work Plan undermines the ability of EURORDIS and other European health NGOs to contribute meaningfully to implementing EU4Health programme’s objectives. #SaveEUHealthNGOs

👉https://epha.org/wp-content/uploads/2021/06/csos-response-to-work-programme-updated.pdf

Dear UN... ✉️

What challenges do you face in your daily life with a rare disease?

Help UN policy makers understand and empathise with the challenges individuals, caregivers and families face by sharing your testimony!

https://www.rarediseasesinternational.org/dearun/

The @EU_Commission gains legitimacy when it engages with NGOs in the policy process by ensuring that the needs of patients and citizens are reflected in its work.

Without EU operating grants we may not be able to continue this role.#SaveEUHealthNGOs

https://epha.org/wp-content/uploads/2021/06/csos-response-to-work-programme-updated.pdf

The COVID-19 pandemic disrupted 83% of rare disease patients' care, exacerbating the many challenges that people living with a rare disease face.

However, COVID-19 also opened doors for more digital health options for rare disease patients.

👉http://l.eurordis.org/6wkv

Patients’ voices need to be heard in the policy process! European health NGOs add value to the work of the EU, reflecting the needs and wishes of patients and citizens that would otherwise be ignored. #BringBackOperatingGrants to #SaveEUHealthNGOs!

https://epha.org/wp-content/uploads/2021/06/csos-response-to-work-programme-updated.pdf