RDAF welcomes new board members in 2019

News - 26 March 2019

In March 2019, the General Assembly of the Rare Disease Action Forum (RDAF) elected the Forum’s board, welcoming two new board members: Dr. Pierre Morneau, General Manager at Takeda Switzerland and Dr. Saskia Karg, Project Lead Rare Diseases at the University Children’s Hospital Zürich.

The two new board members succeed Ms Rute Fernandes, General Manager at Takeda Switzerland and Matthias Heck, Director Global Value, Access and Policy at Alexion who did not run for reelection.

The secretariat would like to thank Rute Fernandes and Matthias Heck  for the considerable expertise and great contributions made as a board members of the RDAF. The new board composition reaffirms the multistakeholder approach of the Forum. The RDAF is looking forward to continuing its efforts to facilitate the development of sustainable solutions that improve the situation of patients with rare diseases in Switzerland.

Today is #RareDiseaseDay

News - 28 February 2019

On 2 March 2019, ProRaris, the Swiss patient umbrella organization for rare diseases, will host the 9th Rare Disease Day meeting in Basel, Switzerland. The aim of this event is to raise awareness and generate momentum to further improve the situation for patients with rare diseases. The Rare Disease Action Forum (RDAF), a multi-stakeholder platform for rare diseases in Switzerland, will attend the event in Basel.

This year’s focus is on how to improve integration of patients isolated by their rare diseases into supportive networks within the Swiss community and health system.

More information on the Rare Disease Day 2019 organized by ProRaris in the link below.

www.proraris.ch/de/homepage.html

Value assessment of orphan drugs in Switzerland and the EU

Press release - Basel, 31 October 2018

 

The Rare Disease Action Forum holds an international event on the topic of “value assessment of orphan drugs in Switzerland and the EU” on 31 October 2018 in Basel, Switzerland

 

Experts from authorities, patient organizations and the industry will provide insights to assessment models for orphan drugs in Switzerland, the EU and specific individual countries such as Germany, Austria and France.

 

A timely and predictable value assessment process for orphan drugs plays an important role in enabling access to treatment for patients with rare diseases. Due to the characteristics of rare diseases and related clinical trials (e.g. very low patient numbers, no active comparator) standard value assessment processes are especially challenging for orphan drugs. An additional hurdle to the reimbursement and access for patients is imposed by the fact that value assessments are mostly conducted at the time of marketing authorization without consideration of growing evidence from use in clinical practice.

 

The RDAF event will give participants the opportunity to exchange knowledge and best practices on this topic.

 

 

News - 18 October 2018
New members joined the RDAF in October 2018

 

In October 2018, Dipharma, the Swiss Society for Porphyria and Prof. Dr med. Philipp Latzin of the Inselspital University hospital's children clinic in Bern joined the Rare Disease Action Forum (RDAF), which now hosts a total of 19 members. With our multistakeholder approach, the RDAF contributes towards the development of sustainable solutions to improve the situation of patients with rare diseases in Switzerland.

 

News - 24 September 2018
RDAF event
Value assessment for orphan drugs in Switzerland and the EU
31 October 2018, Basel


Join us for this international event organized by the Rare Disease Action Forum (RDAF). Meet experts from national competent authorities, industry and patient organizations. Exchange knowledge on value assessment for orphan drugs from different European countries including Switzerland, Germany, Austria and France.

Advanced Program                                     Registration


News - 23 July 2018
New member joined the RDAF in July 2018

In July 2018, Roche joined the Rare Disease Action Forum (RDAF), which now hosts a total of 16 members. With its increased membership, the RDAF reinforces its contribution towards the development of sustainable solutions to improve the situation of patients with rare diseases in Switzerland.

 

News - 23 July 2018
Position paper on IV revision finalized

On 12 July 2018, the Rare Disease Action Forum (RDAF) finalized a position paper on the ongoing revision of the Swiss Invalidity Insurance (IV). The discussions on this issue are ongoing in Parliament, where the Federal Council's proposal dated 15 February 2017 is being examined.

Among others aspects, our position paper highlights the fact that patients with rare diseases will be greatly impacted by the revision and presents aspects that are important for improving the situation of patients with rare diseases in Switzerland.

 

News - 4 June 2018
New members joined the RDAF in May 2018

In May 2018, Swedish Orphan Biovitrum, a company specialized in the area of rare diseases, the Swiss umbrella patient organization ProRaris and the Swiss Foundation for Research on Muscle Diseases (SSEM/FSRMM) became members of the Rare Disease Action Forum (RDAF). In total, the Forum now hosts fifteen members who represent major groups of stakeholders in the area of rare diseases including industry, patient organizations, healthcare organizations, physicians and foundations for research. With its increased membership, the RDAF reinforces its contribution towards the development of sustainable solutions that improve the situation of patients with rare diseases in Switzerland.

 

News - 4 June 2018
RDAF welcomes new board members in 2018

In May 2018, the General Assembly of the Rare Disease Action Forum (RDAF) elected the Forum’s board, welcoming two new board members: Ms. Rea Lal, Rare Disease Lead at Pfizer in Switzerland, and Dr. Jacqueline de Sá, General Secretary of the Swiss umbrella patient organization ProRaris. Rea Lal succeeds Dr. Roland Rutschmann, CEO at Curatis who did not run for reelection. The secretariat would like to thank Dr. Roland Rutschmann for the considerable expertise and great contributions he made as a board member since the founding of the RDAF. The new board composition reaffirms the multistakeholder approach of the Forum. The RDAF is looking forward to continuing its efforts to facilitate the development of sustainable solutions that improve the situation of patients with rare diseases in Switzerland.

 

News - 23 May 2018
The revision of the Swiss invalidity insurance (IV) and its impact on patients with rare diseases

The Rare Disease Action Forum has organized a multi-stakeholder meeting on the topic of “The revision of the Swiss invalidity insurance (IV) and its impact on patients with rare diseases”, held today in Bern at the Kursaal.
Swiss parliamentarians, together with delegates from patient organizations, Healthcare Professionals and industry, are going to discuss how the revision of the IV can contribute to improvements for patients with rare diseases in Switzerland.

In Switzerland, approximately 600.00 people suffer from rare diseases; 75% of these patients are children, and 80% of the diseases are of genetic origin. Those people with rare diseases and their families are mostly impacted by the revision of the IV.
In particular, the envisaged changes to the list of congenital defects will have great impact on patients with rare diseases.

The multi-stakeholder workshop aims at generating impetus to current questions regarding the IV-revision. The focus thereby will be on questions regarding improved access to diagnosis, treatment and care but also on questions regarding societal solidarity and social responsibility.

 

News - 09 March 2018
New members joined the RDAF in 2018

In January 2018, BLACKSWAN Foundation, the Children’s Research Center (CRC) of the Children’s Hospital Zurich - Eleonore Foundation, Pfizer and Prof. Andrea Superti-Furga from the Lausanne University Hospital’s (CHUV's) department of genetic medicine became members of the Rare Disease Action Forum (RDAF). In total, the Forum now hosts twelve members who represent major groups of stakeholders in the area of rare diseases, including the industry, healthcare organizations, physicians and foundations for research. With its increased membership, the RDAF will reinforce its contribution towards the development of sustainable solutions that improve the situation of patients with rare diseases in Switzerland.

 

News - 28 February 2018
RDAF supports the goals of the Rare Disease Day in Bern, Switzerland

On 3 March 2018, ProRaris, the Swiss patient umbrella organization for rare diseases, organizes the Rare Disease Day in Bern, Switzerland. The aim of this event is to raise awareness and generate momentum to further develop national plans and policies to improve the situation for patients with rare diseases. The Rare Disease Action Forum (RDAF), a multi-stakeholder platform for rare diseases in Switzerland, supports the goals of this event and will attend the event in Bern.

The Rare Disease Day in Bern is designed for patients and various actors in the area of rare diseases to meet, discuss and exchange information. The focus of this year’s event is twofold: diagnosis and international networking. Like in the past years, the Federal Office of Public Health (FOPH) will be present and report on the progress of the ‘National Concept for Rare Diseases’.
More information on the Rare Disease Day 2018

 

About the RDAF
The RDAF is a platform to exchange ideas and define actions to raise awareness and improve access to treatments for rare diseases in Switzerland.

The Forum brings together experts from companies active in the pharmaceutical and biotechnology sectors, patient organizations, health care professionals, payors and additional experts in the field of rare diseases.

 

News - 29 August 2017

The Rare Disease Actions Forum (RDAF) amended its membership conditions

In a decision taken in May 2017, the RDAF board amended the Forum’s membership conditions. The RDAF membership is now open to the following categories of actors: Patient organizations in the area of rare diseases; not-for-profit structures or organizations focused on rare diseases; companies that develop and/or commercialize treatments or diagnostics, or provide related services in the area of rare diseases; healthcare institutions and professionals active in the area of rare diseases; private companies providing services or products linked to rare diseases; and health insurance companies. This decision aims to reinforce the RDAF’s multistakeholder approach to finding solutions to facilitate access to therapies for patients with rare diseases in Switzerland.

News - 28 August 2017

ProRaris, the Swiss rare diseases patient alliance, submitted its petition regarding Swiss participation in European Reference Networks (ERNs)

ProRaris successfully collected 459 signatures for its petition regarding the Swiss participation to the European Reference Networks (ERNs). The petition, also supported by the Rare Disease Action Forum (RDAF), asks for Swiss authorities to take urgent actions to enable participation of Swiss healthcare providers and reference centers for rare diseases in the ERNs. Swiss healthcare providers are currently unable to be part of the ERNs due to the prevailing political situation. The petition was submitted to the authorities on 23 August 2017.

 

News - 13 July 2017

ProRaris, the Swiss rare diseases patient alliance, launched a petition regarding Swiss participation in European Reference Networks (ERNs)

ProRaris calls for Swiss authorities to take urgent actions to enable participation of Swiss healthcare providers and reference centers for rare diseases in the European Reference Networks (ERNs). Swiss healthcare providers are currently unable to be part of the ERNs due to the prevailing political situation. The RDAF supports the petition as participation in the ERNs is vital to maintain Switzerland’s attractivity in the area of research as well as to improve the availability and quality of treatments and care for patients with rare diseases.

Sign the petition>

 

Press release - 31 January 2017

New members join the Rare Disease Action Forum

In January 2017, Alexion Pharmaceuticals, Amicus Therapeutics and Sanofi Genzyme joined the Rare Disease Action Forum (RDAF). With this growth, the Forum now includes eight member companies that are all important contributors in the field of rare diseases. Using a multi-stakeholder approach, the RDAF aims at developing and implementing solutions to improve access to diagnosis and treatment for patients with rare diseases in Switzerland.

Press release (PDF): English, GermanFrench, Italian

 

News - 5 October 2016

Input to public consultation on the Swiss Ordinance on Health Insurance
The RDAF provided input to the public consultation launched by the Federal Office of Public Health (FOPH) on the Swiss Ordinance on Health Insurance (KVV/OAMal). The RDAF's input included action oriented suggestions for improving patient access to treatment and focused on aspects that are most important for the area of rare diseases such as the reimbursement process applying to individual cases (the so-called article 71 KVV reimbursement process).

Press release - 25 February 2016

For better access to diagnosis and treatment of rare diseases - forum founded

In the context of the International Rare Disease Day on 29 February 2016, the Rare Disease Action Forum (RDAF) was founded by Curatis, Santhera Pharmaceuticals, SFL, Shire and Vertex, companies active in the pharmaceutical and biotechnology sector.

Press release (PDF): English, German, French, Italian