Tom Schuster commented, “We are a German-speaking self-help association for people with the very rare eye disease LHON. We want to make rare things visible and look with you strengthened, into the future! The focus of our young association is self-help and the creation of awareness for LHON. Therefore, we are committed to a broad education, so that LHON becomes more visible and better diagnosable. In the sense of the founding spirit we bring together patients, relatives as well as interested persons, create common networking and personal exchange. With the decision to join IMP, we take networking to a new, international level. We want to be an informative and helpful anchor for everyone and accompany and support you in your life with LHON.”
 
Paula Morandi, IMP Board Member commented, “As the LHON Patients Representative for Mitocon and IMP I’m extremely pleased to welcome LHON Deutschland e.V. to IMP as I have always expressed the importance to spread awareness on LHON particularly as it is often mistaken  for an eye or retinal disorder which has nothing to do with the MTDNA.  Today, since we have a drug which has been approved by EMA for the treatment of LHON, it is very important  to join forces so as to reach a diagnosis as soon as possible and start treatment before it’s too late.  IMP is the perfect network which brings patients and clinicians together towards finding a cure."

A global grassroots campaign led by persons living with a rare disease and their families has succeeded in securing the adoption of the first-ever UN Resolution on “Addressing the Challenges of Persons Living with a Rare Disease and their Families.”

On 16 December 2021, Rare Diseases International (RDI), the NGO Committee for Rare Diseases, and EURORDIS-Rare Diseases Europe announced that the UN General Assembly formally adopted a resolution recognising the over 300 million Persons Living with a Rare Disease (PLWRD) worldwide and their families.

The Resolution focuses on the importance of non-discrimination and advances key pillars of the UN Sustainable Development Goals (SDGs), including access to education and decent work, reducing poverty, tackling gender inequality, and supporting participation in society.

Adopted by consensus by the 193 UN Member States

The Resolution, proposed by Spain, Brazil, and Qatar and co-sponsored by 54 countries, was adopted by consensus with the support from all 193 UN Member States of the General Assembly. This follows the UN Third Committee’s adoption of a ground-breaking text as part of its agenda on Social Development and is a significant turning point that places the rare disease community firmly on the agenda of the UN.

“Addressing the specific challenges faced by Persons Living with a Rare Disease is a necessary step toward making this vulnerable population visible and contributing to the UN Agenda 2030 SDGs,” said Flaminia Macchia, Rare Diseases International Executive Director. “The consensus in support of the Resolution sends a clear message that Leaving No One Behind is a priority for the UN”.

Presenting the proposal to the UN Third Committee, Maria Bassols, Deputy Permanent Representative of Spain to the UN, affirmed on behalf of the Core Group of Member States that " Persons Living with a Rare Disease are at greater risk of stigmatisation, as well as intersecting forms of discrimination that are obstacles to their full participation in society”.

The global, landmark campaign for equity that achieved the Resolution was the outcome of coordinated and tireless advocacy led by civil society partners, including the NGO Committee for Rare Diseases, RDI, and EURORDIS, and engages national rare disease groups active in over 100 countries. The civil society partners worked to frame the needs of PLWRD beyond health and to illustrate the holistic impact of life with a rare disease on the whole family.

"This UN Resolution within the 2030 Agenda and its SDGs is a supportive global framework to encourage regional policy and action. In the European Union, it should translate into a Europe’s Action Plan for Rare Diseases," said EURORDIS-Rare Diseases Europe’s Chief Executive Officer, Yann Le Cam.

Anders Olauson, Chair of the NGO Committee, stated: “The UNGA Resolution illustrates the power of the global community. Individually, rare diseases are rare, but together PLWRD constitute a significant community deserving of UN support and recognition. Together, we are a powerful and inspirational voice.”

Civil society partners are now working to approach the World Health Organization (WHO) to continue the momentum from this historic achievement and call for a resolution that focuses on health equity and strengthening care systems for PLWRD

The impact of the Resolution