SMA Schweiz joins the Rare Disease Action Forum

News - 26 March 2021

We are proud to welcome SMA Schweiz as the newest member of the Rare Disease Action Forum. Reinforcing RDAF’s multi-stakeholder approach, they will be joining our other members from industry, patient organizations, healthcare professionals, and research organizations. We look forward to their contribution to the collaborative efforts at the RDAF multi-stakeholder platform. Together we will continue our efforts to improve access to diagnosis, treatment and care for patients with rare diseases in Switzerland.

The RDAF submitted its statement for the public consultation on the ordinances for the revision of the Swiss Invalidity Insurance

On 19 March 2021, the RDAF submitted its statement to the Federal Social Insurance Office (BSV, Bundesamt für Sozialversicherungen) for the public consultation on the adjustment of various ordinances which are needed to implement the revised Swiss Invalidity Insurance (IV, Invalidenversicherung).

 

In its submission, the RDAF recalls that the main objective of the IV (integration/reintegration) is fundamentally different from the objectives of the obligatory health insurance (OKP, obligatorische Krankenpflegeversicherung). For the RDAF, this objective must remain the top priority of the IV, although a certain degree of harmonization between the IV and the OKP is desirable (e.g. for the benefit assessment of medicines).

 

The RDAF advocates for the continuity of existing services and the rapid reimbursement of new therapies to be guaranteed. With this aim in view, the RDAF calls for simplified, more efficient and faster processes.

 

For the RDAF, equal access to treatment is of paramount importance both in the IV and the OKP. The existence of a “funding gap” between the two systems is unacceptable from a patient’s perspective, especially since the National Concept for Rare Diseases sets a seamless transition from the IV to the OKP as a specific goal.

 

The RDAF full statement is accessible here.

The RDAF held its General Assembly on 17 March 2021

News - 17 March 2021

During the meeting, the General Assembly re-elected the Board members for 2021:

  • Shayesteh Fürst-Ladani, President,
  • Jacqueline de Sá,
  • Reto Kessler,
  • Rea Lal,
  • Elisabeth Minder,
  • Alessandro Strebel,
  • Andreas Uttenweiler.
     

The RDAF members thanked the Board members for their commitment to the RDAF’s objectives and expressed their support for the initiatives to raise awareness about rare diseases and improve patients’ access to diagnosis, treatment and care.
 

The RDAF members will pursue their endeavors in 2021, supporting amongst other the following initiatives of the RDAF:

  • structured dialogue with the Swiss society of medical and insurance examiners (SGV) to better reflect aspects specific to rare diseases (e.g. regarding clinical trials) in the assessment tool for orphan drugs (OLUtool NonOnko),
  • contributions to public consultations that are relevant for rare diseases (e.g. the ongoing consultation on the revision of the Swiss invalidity law),
  • exchange with public authorities to ensure the implementation of the National Concept Rare Diseases and contribute to shaping future policy initiatives in the field of rare diseases.
     

The RDAF will host a webinar on ‘Access to diagnosis and treatment of rare diseases in Switzerland – Current status, challenges and initiatives’ on 25 March 2021, 08.30-09.30 CET. Experts in the field of rare diseases will give participants an overview of the current situation as well as the challenges for patients living with rare diseases, the development of orphan drugs and access to treatment in Switzerland. Register for the event via the following link: https://bit.ly/3qvOcFY.

Novartis Gene Therapies joins the Rare Disease Action Forum

News - 15 March 2021

We are proud to welcome Novartis Gene Therapies as the newest member of the Rare Disease Action Forum. Reinforcing RDAF’s multi-stakeholder approach, they will be joining our other members from industry, patient organizations, healthcare professionals, and research organizations. We look forward to their contribution to the collaborative efforts at the RDAF multi-stakeholder platform. Together we will continue our efforts to improve access to diagnosis, treatment and care for patients with rare diseases in Switzerland.

RDAF is hosting a free webinar on ‘Access to diagnosis and treatment of rare diseases in Switzerland’ on 25 March 2021

News - 8 March 2021

The RDAF will host a free webinar on ‘Access to diagnosis and treatment of rare diseases in Switzerland – Current status, challenges and initiatives on 25 March 2021 (8.30-9.30 CET). Join us to hear experts in the field of rare diseases from patient organizations, healthcare professionals and industry sharing their insights on the patients’ perspective, the regulatory framework for orphan drugs development and the conditions for access to treatment for rare diseases in Switzerland.

 

This webinar will provide an overview of the current challenges and opportunities in the field of rare diseases and give participants the opportunity to exchange knowledge and best practices on this topic, helping to promote research and development in this area.

 

Find out more about the RDAF initiatives to raise awareness about rare diseases and improve access to diagnosis, treatment and care.

 

Register here

RDAF attends the Swiss Rare Disease Day

News - 5 March 2021

The RDAF is attending the Rare Disease Day virtual event organized by ProRaris on 6 March. We will connect online with patient organizations, policy makers, industry representatives, physicians, researchers, payors and regulators active in the field of rare diseases in Switzerland. We will join discussions on the specialized centers, the national policy and the registry for rare diseases in Switzerland. We will also follow with great interest presentations about pilot projects focusing on metabolic and neuromuscular diseases.
 

The RDAF gathers stakeholders from the industry, patient organizations such as ProRaris, healthcare professionals and research organizations in order to raise awareness about rare diseases, foster dialogue and define common solutions for action.
 

To this end, the RDAF leads and moderates multi-stakeholder events and conducts a wide range of activities to foster development and access to treatment in Switzerland, which is key to improving the lives of patients with rare diseases. Read our latest position on the Swiss healthcare policy here.
 

Follow us on Twitter and LinkedIn to receive information about our upcoming events.
 

Read more about the RDAF’s contribution to raising awareness about rare diseases and improving access to diagnosis, treatment and care in Switzerland.

World Rare Disease Day on 28 February 2021

News - 26 February 2021

This year’s world Rare Disease Day takes place on 28 February 2021. To mark the occasion, thousands of events are being organized across the world with the common objectives of raising awareness about rare diseases and connecting patients, their relatives and all other stakeholders involved in the field of rare diseases.
 

In Switzerland, the RDAF gathers stakeholders from the industry, patient organizations, healthcare professionals and research organizations to raise awareness about rare diseases, foster dialogue and define common solutions for action.
 

To this end, the RDAF leads and moderates multi-stakeholder events and conducts a wide range of activities to foster development and access to treatment in Switzerland, which is key to improving the lives of patients with rare diseases. Follow us on Twitter and LinkedIn to receive information about our upcoming events.
 

Read more about the RDAF’s contribution to raising awareness about rare diseases and improving access to diagnosis, treatment and care in Switzerland.

RDAF submits statement to the public consultation on cost-containment measures in the healthcare sector

News - 10 December 2020

The Rare Disease Action Forum shared with the Swiss Federal Office of Public Health its statement on the public consultation on the revision of the Federal Health Insurance Act concerning package 2 of the cost containment measures.

 

The RDAF highlighted measures that could potentially affect patients with rare diseases and stressed that any implementation would need to take into consideration the specificities of rare diseases and their therapies. It is important to take account of indirect costs of a disease for those affected and their families, and that access to therapies can be achieved as quickly as possible.

Click here to open the RDAF statement.

Retina Suisse and the Swiss Hemophilia Society (SHG) join the Rare Disease Action Forum

News - 28 September 2020

We proudly welcome the patient organizations Retina Suisse and the Swiss Hemophilia Society (SHG) as the newest member of the Rare Disease Action Forum. Reinforcing RDAF’s multi-stakeholder approach, they will be joining our other members from industry, patient organizations, healthcare professionals, and research organizations. We look forward to their contribution to the collaborative efforts at the RDAF multi-stakeholder platform. Together we will continue our efforts to improve access to diagnosis, treatment and care for patients with rare diseases in Switzerland.

Biogen and Prof. Dr. Pascal Escher join the Rare Disease Action Forum

News - 02 September 2020

We are proud to welcome Biogen and Prof. Dr. Pascal Escher as the newest members of the Rare Disease Action Forum. Reinforcing RDAF’s multi-stakeholder approach, they will be joining our other members from industry, patient organizations, healthcare professionals, and research organizations. We look forward to their contribution to the collaborative efforts at the RDAF multi-stakeholder platform. Together we will continue our efforts to improve access to diagnosis, treatment and care for patients with rare diseases in Switzerland.

Vifor Pharma joins the Rare Disease Action Forum as member

News - 22 July 2020

We are proud to welcome Vifor Pharma as the newest member of the Rare Disease Action Forum. We look forward to Vifor’s contribution to the collaborative efforts at the RDAF multi-stakeholder platform which consists of members from industry, patient organizations, healthcare professionals, and research organizations. Together we will continue our efforts to diagnosis, treatment and care for patients with rare diseases in Switzerland.

RDAF multi-stakeholder workshop “registries for rare diseases in Switzerland” – Report published

News - 25 June 2020

The Rare Disease Action Forum (RDAF) published the report about its multi-stakeholder workshop “registries for rare diseases in Switzerland”. The report highlights the key discussion points which were shared by expert presentations from patients, physicians and industry representatives on their experiences with establishing, maintaining and developing patient registries. It also summarizes ideas and proposal which were put forward by participants during the subsequent discussions on this topic. Amongst others, it was highlighted that while registries are highly beneficial for improving care of patients with rare diseases, they require constant development and face challenges in their requirement for sustainable personal resources and financing, as well as balancing data access rights and protections. To maximize benefits of registries, further engagement and cooperation to address harmonization of registry management, multi-sponsoring and national/international networking is required.

 

RDAF attends the European conference on Rare Diseases

News - 14 May 2020

The RDAF is attending the 10th European Conference on Rare Diseases & Orphan Products (14-15 May 2020). We will connect online with patient representatives, policy makers, researchers, clinicians, industry representatives, payers and regulators at the patient-led rare disease conference, to discuss challenges in diagnosis, development and treatment for rare diseases that are core focus areas for the RDAF. The RDAF will also participate in sessions providing insights on the future of rare diseases, the promises of digital health and improving access and affordability. 

Outcomes from the RDAF General Assembly and multi-stakeholder workshop April 2020

News - 20 April 2020

The RDAF General Assembly and the RDAF expert multi-stakeholder workshop on “registries for rare diseases in Switzerland” were held on 8 April 2020.

The General Assembly approved the Annual Report and elected the RDAF Board: Jacqueline de Sà (ProRaris), Shayesteh Fürst-Ladani (SFL Pharma), Reto Kessler (Vertex), Rea Lal (Pfizer), Elisabeth Minder (Porphyria), Robert Schupp (Santhera) and Andreas Uttenweiler (Takeda). Ms. Fürst-Ladani was confirmed as President. The elected Board will represent the RDAF 2020 members, comprising patient organizations, industry, professional healthcare organizations, and research organizations.

The 2019 Annual Report provided an outline of RDAF priorities and key events, including the launch of the RDAF working group on patient access and value assessment for orphan drugs, as well as an expert multi‑stakeholder workshop on “Article 71 KVV and OLUtool NonOnko in the field of rare diseases”.

The RDAF multi-stakeholder workshop on “registries for rare diseases in Switzerland” hosted expert presentations from patients, physicians and industry representatives, sharing their experience with set‑up and challenges of patient registries. The workshop concluded with a roundtable discussion on among other topics, the difficulties in patient enrolment, aspects of patients’ informed consent in the context of reimbursement and sustainable funding of registries for rare diseases in Switzerland.

Partner Event: 8th Rare Diseases Summer School |15-17 July 2020 |Warth, Thurgau

News - 16 March 2020

The 8th Rare Diseases Summer School (Rare Disease Initiative Zurich) will focus on a wide variety of subjects in the arena of rare diseases, from disease mechanisms and animal models, to improving diagnoses and novel therapeutics. There will be lectures by national and international rare disease experts, workshops, poster viewing sessions and selected oral presentations by participants.

The school addresses clinicians, physician-scientists, postdocs, and PhD students as well as select students from various disciplines such as medicine, biology, pharmaceutical science, psychology, sociology, and related fields. Participants are expected to bring a poster about their work or research interests related to rare diseases. See here for Further Information.

The Rare Disease Initiative Zurich (radiz) is a collaboration between the Children's Hospital Zurich, the University of Zurich, and the University Hospital Zurich, and is supported by the RDAF.

The Rare Disease Action Forum welcomes the Rare Disease Day

News - 29 February 2020

While rare means rare for each individual disease, rare becomes many across all those diseases that affect 300 million people and their families who have to cope with these diseases and their impact on quality of life and life expectancy.

 

The Rare Disease Action Forum joins in and shares the message of the rare disease community to raise awareness for patients with a rare disease in Switzerland. In this respect, we extend special congratulations to ProRaris, the Swiss umbrella organization of patients with rare diseases. ProRaris, an RDAF member organization celebrates its 10th anniversary and it’s 10th Rare Disease Day in Switzerland this year.

Novartis joins the Rare Disease Action Forum as member

News - 20 February 2020

In February 2020 Novartis joined the Rare Disease Action Forum (RDAF) as member. With its members coming from industry, patient organizations, Healthcare Professionals and research organizations, the RDAF acts as multi-stakeholder platform in the field of rare diseases. With its increased membership the RDAF reinforces its contribution to improve access to diagnosis, treatment and patient care for patients with rare diseases in Switzerland.

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