INTERVIEW SONNTAGSZEITUNG VOM 28.02.2021
PD DR. ALBINA NOWAK

Dr Stutz April 2019
"Lysosomal storage diseases are very-rare"

Dr Stutz March 2018

Nobody thinks about Fabry's disease

Article in the newspaper Le Temps 2012 

"Un plan national sur les maladies rares a été promis pour 2012"

ProRaris Alliance of Rare Diseases - Switzerland

International Rare Disease Day - Switzerland

FMH Article
2011
"Rare diseases and orphan drugs: a challenge for the healthcare system"

Myozyme becomes mandatory

After Pompe disease patients were only reimbursed for Myozyme by the health insurance funds at the discretion of the medical consultants for around 3 months, it is now to be included on the list of specialties. This means that it will have to be paid for by the health insurance funds again. A handful of patients in Switzerland can breathe a sigh of relief. Among them is Wolfgang Hertle, who we know and who appeared in the news report on 10 to 10. However, the news report was broadcast before the announced admission to the specialty list.

Media release
2011

"Gründung Interessengemeinschaft Seltene Krankheiten"

Infrarouge TSR.CH
2011

Can patients simply be "left to die" because the drugs are too expensive? This question has arisen since the Federal Court ruled in favor of an insurance company when it no longer wanted to cover the costs of a patient's treatment. All these questions will be presented during the special program with reports from 36.9 (on 31.08.2011).

Sendung Santé Media
2011

"Are health insurers rationing health services?"

Sponsorship
2010

Mr. Coppex has received SFr 5'000.- for his participation in the New York Marathon. He gave us this money as a gift.
After a few sweaty training sessions, he was built up for the marathon and managed to complete the race in good time.

The picture shows him crossing the finish line. We would like to thank Mr. Coppex for his generous gift.

Postulate 10.4055; Ruth Humbel

2010

Postulate 10.4055; Ruth Humbel

"National strategy to improve the health situation of people with rare diseases"

Happy Holidays
2010

Christmas Poem - Trees Shining

trees shining, trees dazzling,
giving sweetness everywhere.
Moving in the radiance,
Touching old and young hearts -
Such a feast is given to us.
Our gifts are adored;
We look up and down in amazement,
Hither and there and again and again.

But, prince, when thou meetest
And an evening so blesses thee,
That as lights, that as flames
From thee all together shone
All that thou didst align,
All that committed themselves to thee:
With elevated spiritual gazes
Felt glorious delight.

(Johann Wolfgang von Goethe 1749-1832)

Expressions of Hope II - Werke jetzt online
2009

25.10.2009
In March 2009, we were invited to take part in the art competition "Expression of hope II" again after 2006.

The works by the international artists with lysosomal inherited diseases are now fully compiled and available on the website www.expressionofhope.com. It's worth taking a look at the pictures, which are accompanied by the artists' thoughts.

Art Contest - Expressions of Hope
2009

11.3.09
In 2006, an art competition was held with works by people with the lysosomal storage disorder LSD and their caregivers. These LSDs also include Fabry's disease. From Switzerland

have 9 participants, some of them from fabrysuisse. A few of these works (pictures or photos) were very good and were awarded prizes. They took part in a world tour. These pictures and photos were on display in various major cities.

More important than success in the competition is participation and creative activity.

To enter, visit the website: www.expressionofhope.com. All competition conditions are also listed there in detail. Here are the most important conditions of participation:

The registration can be done on the website

Delivery date: 29 May 2009

Works participating in the World Expo are automatically owned by the organizer Genzyme.

Contributors submit a photo of the work.

Genzyme becomes owner of the photo.

All participants should submit a short written explanation of the work.

In order to participate in Expression of Hope, it is necessary to provide your name and address.The organizer Genzyme undertakes to use the data exclusively for the competition.

Expressions of Hope III -  Works Now Online 2015

Review of Rare Disease Day

2008

Review February 29, 2008

Rare diseases are not a rarity, but a reality This was the message that the first Rare Disease Day, on February 29, 2008, sought to convey to the public, the media, healthcare professionals, politicians, and pharmaceutical companies in Europe and beyond.

Press conferences, rallies, exhibitions, galas, concerts, and other events took place in numerous countries on this day, petitions were submitted, parliamentary interventions were carried out, and donations were collected. Many events were held under the patronage of well-known and popular personalities, e.g., European royal families.

In Germany, for example, the €50,000 Eva Luise Köhler Research Prize for Rare Diseases was awarded by the wife of German President Horst Köhler. The prize is an initiative of the Eva Luise and Horst Köhler Foundation in cooperation with ACHSE e.V., the Alliance for Chronic Rare Diseases. The aim is to stimulate and improve research in the field of rare diseases. The two prize winners receive the award for their innovative research project on “Blood-brain barrier and enzyme replacement therapies for lysosomal storage diseases.”

More information: www.eurordis.org/IMG/pdf/PM_Forschungspreis.pdf

few days later, Eurodis held a major closing event in Brussels in the form of a hearing on rare diseases in the European Parliament.

Rare Disease Day

2008

A rare day for very special people February 29, 2008, was declared the first European Rare Disease Day. In future, it will take place every year on February 28.

Rare Disease Day is primarily aimed at the general public. However, its messages will also be directed at European and national authorities and politicians, as well as the media. The goals of the day are:

to raise public awareness of rare diseases and their impact on the lives of those affected

to inform patients with rare diseases and give them hope, especially those who have not yet found a support network

to strengthen the joint fight against rare diseases in Europe

To raise funds for our work at European and national level

To become the starting point for an even more comprehensive World Rare Disease Day

To mark this occasion, the Orphanet Switzerland association is looking for people who would like to share their experiences of living with a “rare disease.”

Appeal from Dr. D'Amato Sizonenko

Health Consultation

2008

Health Consultation: Articles on the topic of “Congenital storage diseases”

Interview with Andrea Walther in the new issue of the magazine “Health Consultation” dated March 7, 2008, on the article

In addition:

On Sunday, March 9, 2008, at 8:05 p.m., SF2 will broadcast a segment on lysosomal storage disorders in its live program “Health Consultation.”

The program will be repeated:

Monday, March 10, at 12:50 a.m. on SF zwei

Saturday, March 15, 6:00 p.m. on SF zwei

Sunday, March 16, 2:00 p.m. hourly on SF info

20-minute series on rare diseases

December 20, 2008

Since mid-November, the free newspaper 20 Minuten has been publishing regular articles on various rare diseases. For example, there is a report about a man who faints when he gets scared, a boy with progeria whose body ages very quickly, and Truman syndrome, a perception disorder, as well as many other rare diseases.

In most cases, the disease is explained using a specific person as an example and describing how the person affected deals with their fate. In addition, factual information and links to the diseases are provided.

With its high circulation, 20 Minuten contributes to raising public awareness of rare diseases.

Rare diseases remain a political issue

2008

In the fall, rare diseases remained a political issue throughout Europe

December 14, 2008: On September 9, the Bulgarian Ministry of Health announced its approval of the National Program for Rare Diseases. The program, developed by leading specialists in this field, will run from 2009 to 2013.

... In mid-October, two events on the topic of “rare diseases” took place in Paris. On October 10, as part of the World Rett Syndrome Congress 2008, a day was dedicated to the theme: “Europe and rare diseases: meeting the hopes and expectations of patients and families.” The focus was on European health policy concerning rare diseases. The role of patient organizations was also on the agenda. At the European Symposium on Rare Disorders, also on October 10, Sarkozy promised to continue supporting the financing of therapy centers for rare diseases in France. France was the first European country to implement its own plan for rare diseases, and now France is expanding its support for projects and programs for rare diseases at the European level.

... On October 16 and 17, the Ninth Workshop on Collaboration in the Development of Therapies for Rare Diseases, organized by EPPOSI (European Platform for Patients' Organizations, Science, and Industry), took place. The aim was to provide a platform for discussions on current issues. The main focus was on promoting early diagnosis, improving access to the latest treatment options for all, and optimizing reimbursement policies.

www.medacad.org/epposi2008/index1.htm...

 The 11th European Health Forum in Bad Gastein also featured side events dedicated entirely to the topic of rare diseases.

More: www.ehfg.org/index.php...

... Steps are also being taken across Europe: the European Commission published a statement on November 11. The communication sets out a Community strategy for action in three main areas, aimed at

- improving the recognition and awareness of rare diseases,

- supporting national plans to combat rare diseases in the Member States, and

- strengthen cooperation and coordination in the fight against rare diseases at European level.

More: ec.europa.eu/health/ph_threats/non_com/rare_10_en.htm

Events on the topic of “Rare Diseases” in Paris

2008

September 30, 2008 Events on the topic of “Rare Diseases” in Paris

In mid-October, there will be two events on the topic of “rare diseases” in Paris. On October 10, as part of the World Rett Syndrome Congress 2008, there will be a day under the motto: “Europe and rare diseases: meeting the hopes and expectations of patients and families.”

The main focus will be on European health policy concerning rare diseases. The role of patient organizations is also on the agenda.

www.aimgroup.it/2008/wrsc/files/PreliminaryProgramme.pdf

This will be followed on October 16 and 17 by the “Ninth Workshop on Collaboration in the Development of Therapies for Rare Diseases,” organized by EPPOSI (European Platform for Patients' Organizations, Science and Industry).

The aim of the workshop is to provide a platform for discussion on current issues relating to consensus building and fostering partnerships between patients, science, and industry, both in Europe and in other member states. The main focus is on promoting early diagnosis, improving access to the latest treatment options for all, and optimizing reimbursement policies.

www.medacad.org/epposi2008/index1.htm