Piirkond : Euroopa Liit
Tervis

Accelerated Approval of Elevidys (SRP-9001) for Children with DMD

Petitsioon on adresseeritud
Europäische Arzneimittel-Agentur (EMA)
34 219 Toetav
98% saavutatud 35 000 kogumiseesmärgi jaoks
34 219 Toetav
98% saavutatud 35 000 kogumiseesmärgi jaoks
  1. Algatatud juuni 2023
  2. Kogumine 9 nädalat
  3. Esitamine
  4. Dialoog adressaadiga
  5. Otsus

Nõustun, et minu andmed salvestatakse . Mina otsustan, kes näeb minu toetust. Võin selle nõusoleku igal ajal tagasi võtta .

 

Lady's and Gentlemen
As the undersigned of this petition, we would like to speak out in favor of Elevidys (SRP-9001) from Sarepta Therapeutics / Roche being approved quickly in Europe for children with Duchenne muscular dystrophy (DMD) who are able to walk. We believe this approval is urgently needed because every day counts for patients and the fastest possible treatment can mean a significant improvement in the quality of life for patients with DMD.

Selgitus

DMD is an inherited disease that can lead to a gradual deterioration in muscle function and ultimately to respiratory and cardiac impairment. There is currently no cure for DMD, and existing therapies are primarily aimed at relieving the symptoms of the disease. However, SRP-9001 offers a promising avenue to target the disease.
In the most common form, Duchenne muscular dystrophy, the prognosis is serious. Those affected usually die at the age of 20 to 25 from the progressive deterioration of the heart and respiratory muscles.
SRP-9001 has just been approved in the US and has shown significant improvements in patients with DMD in multiple studies. The rapid approval of SRP-9001 in Europe could give many European patients the same opportunity for an improved quality of life.
Therefore, we urge you to advocate for rapid approval of Sarepta Therapeutics' SRP-9001 in Europe for Duchenne muscular dystrophy. Every day matters for the patients with DMD and we believe that SRP-9001 represents a very good treatment option.
More information about SRP-9001

Täname Teid toetuse eest, Kai Andre-Lüchtefeld Bad Laer
Küsimus algatajale

Link petitsioonile

Pilt QR-koodiga

QR-koodiga ärarebitav lipik

lae alla (PDF)

See petitsioon on tõlgitud järgmistesse keeltesse

Tõlgi see petitsioon kohe

Uus keeleversioon

uudised

  • Support for the gene therapy petition

    Dear Sir or Madam

    I hope this email reaches you in good health and good spirits. I am writing to you on behalf of our petition group, which is campaigning for rapid approval of Sarepta Therapeutics SRP-9001 (Elevidys) gene therapy in Germany.

    As you may know, this gene therapy was approved in the USA almost six months ago. Since then, we have received more and more positive feedback from various publicly accessible forums supporting patients with Duchenne muscular dystrophy (DMD) about the effect of the gene therapy.

    Some parents report that after 8 weeks of gene therapy administration, there are no more signs of the "Growers' sign", which is typical for boys with DMD and describes the difficulty... Edasi

arutelu

Bolni otroci si zaslužijo vsa možna zdravljenja. Denar je tu najmanj pomemben problem.

vastu-argumenti veel pole.

Miks inimesed allkirjastavad

Tööriistad petitsiooni levitamiseks.

Kas Teil on oma veebisait, ajaveeb või terve veebiportaal? Saa selle petitsiooni propageerijaks ja korraldajaks. Meil on Teie lehtedele manustamiseks ribareklaamid, vidinad ja API (liides). Tööriistade juurde

See petitsioon on tõlgitud järgmistesse keeltesse

Tõlgi see petitsioon kohe

Uus keeleversioon

Aidake tugevdada kodanikuosalust. Tahame teha Teie mured kuuldavaks, jäädes samas iseseisvaks.

Annetage nüüd